TY 2021 Form 990

- TIN:

Form990

Department of the TreasuryInternal Revenue Service

Return of Organization Exempt From Income Tax

Under section 501(c), 527, or 4947(a)(1) of the Internal Revenue Code (except private foundations)

Do not enter social security numbers on this form as it may be made public.

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2021

Open to Public Inspection

A For the 2021 calendar year, or tax year beginning 01-01-2021 , and ending 12-31-2021

BCheck if applicable: Address change Name change Initial return Final return/terminated Amended return Application pending

CName of organization
Rare Disease Company Coalition Inc

Doing business as

Number and street (or P.O. box if mail is not delivered to street address)
1455 Pennsylvania Avenue NW 1150

Room/suite

City or town, state or province, country, and ZIP or foreign postal code
Washington, DC20004

D Employer identification number

86-2999172

E Telephone number

G Gross receipts $ 401,249

F Name and address of principal officer:

1455 Pennsylvania Avenue NW 1150
Washington,DC20004

Tax-exempt status: 501(c)(3) 501(c) ( 6 ) LeftBullet

(insert no.) 4947(a)(1) or 527

Website:

www.rarecoalition.com

H(a)

Is this a group return for
subordinates? Yes No

H(b)

Are all subordinates
included?

Yes No

If "No," attach a list. See instructions.

H(c)

Group exemption number MediumBullet

K Form of organization: Corporation Trust Association Other MediumBullet

L Year of formation: 2021

M State of legal domicile: DC

Part I

Summary

1	Briefly describe the organization’s mission or most significant activities: The Coalition operates exclusively to promote the common business interests of the U.S. rare disease pharmaceutical sector through policy advocacy activities including education, lobbying, advertising and public outreach, patient and industry meetings, roundtables, and briefings regarding federal legislative and regulatory matters affecting rare disease drug development, approval, and equitable access to treatment.
2	Check this box
3	Number of voting members of the governing body (Part VI, line 1a) ........	3	24
4	Number of independent voting members of the governing body (Part VI, line 1b) .....	4	24
5	Total number of individuals employed in calendar year 2021 (Part V, line 2a) ......	5	0
6	Total number of volunteers (estimate if necessary) .............	6
7a	Total unrelated business revenue from Part VIII, column (C), line 12 ........	7a	0
b	Net unrelated business taxable income from Form 990-T, Part I, line 11 .........	7b

		Prior Year	Current Year
8	Contributions and grants (Part VIII, line 1h) .........		401,249
9	Program service revenue (Part VIII, line 2g) .........		0
10	Investment income (Part VIII, column (A), lines 3, 4, and 7d ) ....		0
11	Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e)		0
12	Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)		401,249
13	Grants and similar amounts paid (Part IX, column (A), lines 1–3 )...		0
14	Benefits paid to or for members (Part IX, column (A), line 4).....		0
15	Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10)		0
16a	Professional fundraising fees (Part IX, column (A), line 11e) .....		0
b	Total fundraising expenses (Part IX, column (D), line 25) 0
17	Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e)....		310,097
18	Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25)		310,097
19	Revenue less expenses. Subtract line 18 from line 12.......		91,152
		Beginning of Current Year	End of Year
20	Total assets (Part X, line 16).............		91,152
21	Total liabilities (Part X, line 26).............		0
22	Net assets or fund balances. Subtract line 21 from line 20.....		91,152

Part II

Signature Block

Under penalties of perjury, I declare that I have examined this return, including accompanying schedules and statements, and to the best of my knowledge and belief, it is true, correct, and complete. Declaration of preparer (other than officer) is based on all information of which preparer has any knowledge.

Sign Here

	Signature of officer	Date

	Type or print name and title

Paid Preparer Use Only

Print/Type preparer's name

Preparer's signature

Date

Check if
self-employed

PTIN

Firm's name MediumBullet

Firm's EIN MediumBullet

Firm's address MediumBullet

Phone no.

May the IRS discuss this return with the preparer shown above? (see instructions) ..........YesNo

For Paperwork Reduction Act Notice, see the separate instructions.

Cat. No. 11282Y Form 990 (2021)

Form 990 (2021)

Page 2

Part III

Statement of Program Service Accomplishments

Check if Schedule O contains a response or note to any line in this Part III..............

Briefly describe the organization’s mission: The Coalition operates exclusively to promote the common business interests of the U.S. rare disease pharmaceutical sector through policy advocacy activities including education, lobbying, advertising and public outreach, patient and industry meetings, roundtables, and briefings regarding federal legislative and regulatory matters affecting rare disease drug development, approval, and equitable access to treatment.

Did the organization undertake any significant program services during the year which were not listed on
the prior Form 990 or 990-EZ? ..................... Yes No

If "Yes," describe these new services on Schedule O.

Did the organization cease conducting, or make significant changes in how it conducts, any program
services? ........................... Yes No

If "Yes," describe these changes on Schedule O.

Describe the organization’s program service accomplishments for each of its three largest program services, as measured by expenses. Section 501(c)(3) and 501(c)(4) organizations are required to report the amount of grants and allocations to others, the total expenses, and revenue, if any, for each program service reported.


4a	(Code: ) (Expenses $ 102,260 including grants of $ ) (Revenue $ )
	Provide policy advocacy services for rare disease companies at both the federal and state level.

4b	(Code: ) (Expenses $ including grants of $ ) (Revenue $ )












4c	(Code: ) (Expenses $ including grants of $ ) (Revenue $ )












4d	Other program services (Describe in Schedule O.)
	(Expenses $ including grants of $ ) (Revenue $ )
4e	Total program service expenses102,260

Form 990 (2021)

Page 3

Part IV

Checklist of Required Schedules

Yes

Is the organization described in section 501(c)(3) or 4947(a)(1) (other than a private foundation)? If "Yes," complete Schedule A.....................

Is the organization required to complete Schedule B, Schedule of Contributors? See instructions. Click to see attachment

...

Yes

Did the organization engage in direct or indirect political campaign activities on behalf of or in opposition to candidates for public office? If "Yes," complete Schedule C, Part I Click to see attachment

.............

Section 501(c)(3) organizations. Did the organization engage in lobbying activities, or have a section 501(h) election in effect during the tax year? If "Yes," complete Schedule C, Part II.........

Is the organization a section 501(c)(4), 501(c)(5), or 501(c)(6) organization that receives membership dues, assessments, or similar amounts as defined in Rev. Proc. 98-19? If "Yes," complete Schedule C, Part III Click to see attachment

Yes

Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the right to provide advice on the distribution or investment of amounts in such funds or accounts? If "Yes," complete Schedule D, Part I.........................

Did the organization receive or hold a conservation easement, including easements to preserve open space,
the environment, historic land areas, or historic structures? If "Yes," complete Schedule D, Part II....

Did the organization maintain collections of works of art, historical treasures, or other similar assets? If "Yes,"
complete Schedule D, Part III..............

Did the organization report an amount in Part X, line 21 for escrow or custodial account liability; serve as a custodian for amounts not listed in Part X; or provide credit counseling, debt management, credit repair, or debt negotiation services? If "Yes," complete Schedule D, Part IV..............

Did the organization, directly or through a related organization, hold assets in temporarily restricted endowments, permanent endowments, or quasi endowments? If "Yes," complete Schedule D, Part V......

If the organization’s answer to any of the following questions is "Yes," then complete Schedule D, Parts VI, VII, VIII, IX, or X, as applicable.

Did the organization report an amount for land, buildings, and equipment in Part X, line 10? If "Yes," complete
Schedule D, Part VI. ...................

11a

Did the organization report an amount for investments—other securities in Part X, line 12 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VII.......

11b

Did the organization report an amount for investments—program related in Part X, line 13 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part VIII.......

11c

Did the organization report an amount for other assets in Part X, line 15 that is 5% or more of its total assets reported in Part X, line 16? If "Yes," complete Schedule D, Part IX............

11d

Did the organization report an amount for other liabilities in Part X, line 25? If "Yes," complete Schedule D, Part X

11e

Did the organization’s separate or consolidated financial statements for the tax year include a footnote that addresses the organization’s liability for uncertain tax positions under FIN 48 (ASC 740)? If "Yes," complete Schedule D, Part X

11f

12a

Did the organization obtain separate, independent audited financial statements for the tax year? If "Yes," complete
Schedule D, Parts XI and XII......................

12a

Was the organization included in consolidated, independent audited financial statements for the tax year? If "Yes," and if the organization answered "No" to line 12a, then completing Schedule D, Parts XI and XII is optional

12b

Is the organization a school described in section 170(b)(1)(A)(ii)? If "Yes," complete Schedule E

14a

Did the organization maintain an office, employees, or agents outside of the United States? .....

14a

Did the organization have aggregate revenues or expenses of more than $10,000 from grantmaking, fundraising, business, investment, and program service activities outside the United States, or aggregate foreign investments valued at $100,000 or more? If "Yes," complete Schedule F, Parts I and IV.........

14b

Did the organization report on Part IX, column (A), line 3, more than $5,000 of grants or other assistance to or for any foreign organization? If “Yes,” complete Schedule F, Parts II and IV.....

Did the organization report on Part IX, column (A), line 3, more than $5,000 of aggregate grants or other assistance to or for foreign individuals? If “Yes,” complete Schedule F, Parts III and IV...

Did the organization report a total of more than $15,000 of expenses for professional fundraising services on Part IX, column (A), lines 6 and 11e? If "Yes," complete Schedule G, Part I. See instructions. ....

Did the organization report more than $15,000 total of fundraising event gross income and contributions on Part VIII, lines 1c and 8a? If "Yes," complete Schedule G, Part II............

Did the organization report more than $15,000 of gross income from gaming activities on Part VIII, line 9a? If "Yes," complete Schedule G, Part III...................

20a

Did the organization operate one or more hospital facilities? If "Yes," complete Schedule H....

20a

If "Yes" to line 20a, did the organization attach a copy of its audited financial statements to this return?

20b

Did the organization report more than $5,000 of grants or other assistance to any domestic organization or domestic government on Part IX, column (A), line 1? If “Yes,” complete Schedule I, Parts I and II.....

Form 990 (2021)

Page 4

Part IV

Checklist of Required Schedules (continued)

Yes

Did the organization report more than $5,000 of grants or other assistance to or for domestic individuals on Part IX, column (A), line 2? If “Yes,” complete Schedule I, Parts I and III........

Did the organization answer "Yes" to Part VII, Section A, line 3, 4, or 5, about compensation of the organization’s current and former officers, directors, trustees, key employees, and highest compensated employees? If "Yes," complete Schedule J.......................

24a

Did the organization have a tax-exempt bond issue with an outstanding principal amount of more than $100,000 as of the last day of the year, that was issued after December 31, 2002? If “Yes,” answer lines 24b through 24d and complete Schedule K. If “No,” go to line 25a...............

24a

Did the organization invest any proceeds of tax-exempt bonds beyond a temporary period exception?...

24b

Did the organization maintain an escrow account other than a refunding escrow at any time during the year
to defease any tax-exempt bonds? ...............

24c

Did the organization act as an "on behalf of" issuer for bonds outstanding at any time during the year?...

24d

25a

Section 501(c)(3), 501(c)(4), and 501(c)(29) organizations. Did the organization engage in an excess benefit transaction with a disqualified person during the year? If "Yes," complete Schedule L, Part I ....

25a

Is the organization aware that it engaged in an excess benefit transaction with a disqualified person in a prior year, and that the transaction has not been reported on any of the organization’s prior Forms 990 or 990-EZ? If "Yes," complete Schedule L, Part I.......................

25b

Did the organization report any amount on Part X, line 5 or 22 for receivables from or payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons? If "Yes," complete Schedule L, Part II Click to see attachment

...........

Did the organization provide a grant or other assistance to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or employee thereof, a grant selection committee member, or to a 35% controlled entity (including an employee thereof) or family member of any of these persons?

If "Yes," complete

Schedule L, Part III Click to see attachment

.........................

Was the organization a party to a business transaction with one of the following parties (see the Schedule L, Part IV instructions for applicable filing thresholds, conditions, and exceptions):

A current or former officer, director, trustee, key employee, creator or founder, or substantial contributor? If "Yes," complete Schedule L, Part IV...................... Click to see attachment

28a

Yes

A family member of any individual described in line 28a? If "Yes," complete Schedule L, Part IV..... Click to see attachment

28b

A 35% controlled entity of one or more individuals and/or organizations described in line 28a or 28b? If "Yes," complete Schedule L, Part IV..................... Click to see attachment

28c

Yes

Did the organization receive more than $25,000 in non-cash contributions? If "Yes," complete Schedule M..

Did the organization receive contributions of art, historical treasures, or other similar assets, or qualified conservation contributions? If "Yes," complete Schedule M .................

Did the organization liquidate, terminate, or dissolve and cease operations? If "Yes," complete Schedule N, Part I

Did the organization sell, exchange, dispose of, or transfer more than 25% of its net assets? If "Yes," complete Schedule N, Part II........................

Did the organization own 100% of an entity disregarded as separate from the organization under Regulations sections 301.7701-2 and 301.7701-3? If "Yes," complete Schedule R, Part I............

Was the organization related to any tax-exempt or taxable entity? If "Yes," complete Schedule R, Part II, III, or IV, and Part V, line 1.........................

35a

Did the organization have a controlled entity within the meaning of section 512(b)(13)?

35a

If ‘Yes’ to line 35a, did the organization receive any payment from or engage in any transaction with a controlled entity within the meaning of section 512(b)(13)? If "Yes," complete Schedule R, Part V, line 2 ...

35b

Section 501(c)(3) organizations. Did the organization make any transfers to an exempt non-charitable related organization? If "Yes," complete Schedule R, Part V, line 2.............

Did the organization conduct more than 5% of its activities through an entity that is not a related organization and that is treated as a partnership for federal income tax purposes? If "Yes," complete Schedule R, Part VI

Did the organization complete Schedule O and provide explanations on Schedule O for Part VI, lines 11b and 19? Note. All Form 990 filers are required to complete Schedule O. ............

Yes

Part V

Statements Regarding Other IRS Filings and Tax Compliance
Check if Schedule O contains a response or note to any line in this Part V...........

Yes

Enter the number reported in box 3 of Form 1096. Enter -0- if not applicable ..

Enter the number of Forms W-2G included on line 1a. Enter -0- if not applicable .

Did the organization comply with backup withholding rules for reportable payments to vendors and reportable gaming (gambling) winnings to prize winners? ..................

Form 990 (2021)

Page 5

Part V

Statements Regarding Other IRS Filings and Tax Compliance (continued)

Enter the number of employees reported on Form W-3, Transmittal of Wage and
Tax Statements, filed for the calendar year ending with or within the year covered by this return ..................

If at least one is reported on line 2a, did the organization file all required federal employment tax returns?
Note. If the sum of lines 1a and 2a is greater than 250, you may be required to e-file. See instructions.

Did the organization have unrelated business gross income of $1,000 or more during the year?...

If “Yes,” has it filed a Form 990-T for this year? If “No” to line 3b, provide an explanation in Schedule O...

At any time during the calendar year, did the organization have an interest in, or a signature or other authority over, a financial account in a foreign country (such as a bank account, securities account, or other financial account)? ..

If "Yes," enter the name of the foreign country: MediumBullet

See instructions for filing requirements for FinCEN Form 114, Report of Foreign Bank and Financial Accounts (FBAR).

Was the organization a party to a prohibited tax shelter transaction at any time during the tax year? ..

Did any taxable party notify the organization that it was or is a party to a prohibited tax shelter transaction?

If "Yes," to line 5a or 5b, did the organization file Form 8886-T? ............

Does the organization have annual gross receipts that are normally greater than $100,000, and did the organization solicit any contributions that were not tax deductible as charitable contributions? ...

If "Yes," did the organization include with every solicitation an express statement that such contributions or gifts were not tax deductible? ......................

Organizations that may receive deductible contributions under section 170(c).

Did the organization receive a payment in excess of $75 made partly as a contribution and partly for goods and services provided to the payor? ....................

If "Yes," did the organization notify the donor of the value of the goods or services provided? .....

Did the organization sell, exchange, or otherwise dispose of tangible personal property for which it was required to file Form 8282? .........................

If "Yes," indicate the number of Forms 8282 filed during the year ....

Did the organization receive any funds, directly or indirectly, to pay premiums on a personal benefit contract?

Did the organization, during the year, pay premiums, directly or indirectly, on a personal benefit contract? ..

If the organization received a contribution of qualified intellectual property, did the organization file Form 8899 as required? ......................

If the organization received a contribution of cars, boats, airplanes, or other vehicles, did the organization file a Form 1098-C? ..........................

Sponsoring organizations maintaining donor advised funds. Did a donor advised fund maintained by the sponsoring organization have excess business holdings at any time during the year? ........

Sponsoring organizations maintaining donor advised funds.

Did the sponsoring organization make any taxable distributions under section 4966?........

Did the sponsoring organization make a distribution to a donor, donor advisor, or related person?...

Section 501(c)(7) organizations. Enter:

Initiation fees and capital contributions included on Part VIII, line 12 ...

10a

Gross receipts, included on Form 990, Part VIII, line 12, for public use of club facilities

10b

Section 501(c)(12) organizations. Enter:

Gross income from members or shareholders .........

11a

Gross income from other sources. (Do not net amounts due or paid to other sources against amounts due or received from them.) ..........

11b

12a

Section 4947(a)(1) non-exempt charitable trusts. Is the organization filing Form 990 in lieu of Form 1041?

12a

If "Yes," enter the amount of tax-exempt interest received or accrued during the year.

12b

Section 501(c)(29) qualified nonprofit health insurance issuers.

Is the organization licensed to issue qualified health plans in more than one state? .........
Note. See the instructions for additional information the organization must report on Schedule O.

13a

Enter the amount of reserves the organization is required to maintain by the states in which the organization is licensed to issue qualified health plans ....

13b

Enter the amount of reserves on hand ............

13c

14a

Did the organization receive any payments for indoor tanning services during the tax year?.....

14a

If "Yes," has it filed a Form 720 to report these payments? If "No," provide an explanation in Schedule O..

14b

Is the organization subject to the section 4960 tax on payment(s) of more than $1,000,000 in remuneration or excess parachute payment(s) during the year? ....................
If "Yes," see the instructions and file Form 4720, Schedule N.

Is the organization an educational institution subject to the section 4968 excise tax on net investment income? ..
If "Yes," complete Form 4720, Schedule O.

Section 501(c)(21) organizations. Did the trust, any disqualified person, or mine operator engage in any activities that would result in the imposition of an excise tax under section 4951, 4952, or 4953? ..
If "Yes," complete Form 6069.

Form 990 (2021)

Page 6

Part VI

Governance, Management, and Disclosure. For each "Yes" response to lines 2 through 7b below, and for a "No" response to lines 8a, 8b, or 10b below, describe the circumstances, processes, or changes in Schedule O. See instructions.

Check if Schedule O contains a response or note to any line in this Part VI..............

Section A. Governing Body and Management

Yes

Enter the number of voting members of the governing body at the end of the tax year

If there are material differences in voting rights among members of the governing body, or if the governing body delegated broad authority to an executive committee or similar committee, explain in Schedule O.

Enter the number of voting members included in line 1a, above, who are independent

Did any officer, director, trustee, or key employee have a family relationship or a business relationship with any other officer, director, trustee, or key employee? .................

Did the organization delegate control over management duties customarily performed by or under the direct supervision of officers, directors or trustees, or key employees to a management company or other person? .

Yes

Did the organization make any significant changes to its governing documents since the prior Form 990 was filed? .

Did the organization become aware during the year of a significant diversion of the organization’s assets? .

Did the organization have members or stockholders? ................

Yes

Did the organization have members, stockholders, or other persons who had the power to elect or appoint one or more members of the governing body? ....................

Yes

Are any governance decisions of the organization reserved to (or subject to approval by) members, stockholders, or persons other than the governing body? ...................

Did the organization contemporaneously document the meetings held or written actions undertaken during the year by the following:

The governing body? .......................

Each committee with authority to act on behalf of the governing body? ............

Is there any officer, director, trustee, or key employee listed in Part VII, Section A, who cannot be reached at the organization’s mailing address? If "Yes," provide the names and addresses in Schedule O.......

Section B. Policies (This Section B requests information about policies not required by the Internal Revenue Code.)

Yes

10a

Did the organization have local chapters, branches, or affiliates? ............

10a

If "Yes," did the organization have written policies and procedures governing the activities of such chapters, affiliates, and branches to ensure their operations are consistent with the organization's exempt purposes?

10b

11a

Has the organization provided a complete copy of this Form 990 to all members of its governing body before filing the form? ............................

11a

Describe on Schedule O the process, if any, used by the organization to review this Form 990. .....

12a

Did the organization have a written conflict of interest policy? If "No," go to line 13.......

12a

Were officers, directors, or trustees, and key employees required to disclose annually interests that could give rise to conflicts? ..........................

12b

Did the organization regularly and consistently monitor and enforce compliance with the policy? If "Yes," describe on Schedule O how this was done...................

12c

Did the organization have a written whistleblower policy? ...............

Did the organization have a written document retention and destruction policy? .........

Did the process for determining compensation of the following persons include a review and approval by independent persons, comparability data, and contemporaneous substantiation of the deliberation and decision?

The organization’s CEO, Executive Director, or top management official ...........

15a

Other officers or key employees of the organization ................

15b

If "Yes" to line 15a or 15b, describe the process on Schedule O. See instructions.

16a

Did the organization invest in, contribute assets to, or participate in a joint venture or similar arrangement with a taxable entity during the year? ......................

16a

If "Yes," did the organization follow a written policy or procedure requiring the organization to evaluate its participation in joint venture arrangements under applicable federal tax law, and take steps to safeguard the organization’s exempt status with respect to such arrangements? ............

16b

Section C. Disclosure

List the states with which a copy of this Form 990 is required to be filed MediumBullet

Section 6104 requires an organization to make its Form 1023 (1024 or 1024-A, if applicable), 990, and 990-T (section 501(c)(3)s only) available for public inspection. Indicate how you made these available. Check all that apply.

Own website Another's website Upon request Other (explain in Schedule O)

Describe in Schedule O whether (and if so, how) the organization made its governing documents, conflict of interest policy, and financial statements available to the public during the tax year.

State the name, address, and telephone number of the person who possesses the organization's books and records:
MediumBullet

Kerryn Lawson1455 Pennsylvania Avenue NW Ste 115 Washington,DC20004 (202) 809-7357

Form 990 (2021)

Page 7

Part VII

Compensation of Officers, Directors,Trustees, Key Employees, Highest Compensated Employees, and Independent Contractors

Check if Schedule O contains a response or note to any line in this Part VII..............

Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees

1a Complete this table for all persons required to be listed. Report compensation for the calendar year ending with or within the organization’s tax year.
RoundBullet

List all of the organization’s current officers, directors, trustees (whether individuals or organizations), regardless of amount
of compensation. Enter -0- in columns (D), (E), and (F) if no compensation was paid.

List all of the organization’s current key employees, if any. See the instructions for definition of "key employee."

List the organization’s five current highest compensated employees (other than an officer, director, trustee or key employee)
who received reportable compensation (box 5 of Form W-2, Form 1099-MISC, and/or box 1 of Form 1099-NEC) of more than $100,000 from the
organization and any related organizations.

List all of the organization’s former officers, key employees, or highest compensated employees who received more than $100,000
of reportable compensation from the organization and any related organizations.

List all of the organization’s former directors or trustees that received, in the capacity as a former director or trustee of the
organization, more than $10,000 of reportable compensation from the organization and any related organizations.

See the instructions for the order in which to list the persons above.

Check this box if neither the organization nor any related organization compensated any current officer, director, or trustee.

(A) Name and title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)		(D) Reportable compensation from the organization (W-2/1099-MISC/1099-NEC)	(E) Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC)	(F) Estimated amount of other compensation from the organization and related organizations
(A) Name and title
(1) Deirdre Parsons...................................................................... President	1.00 ................. 0.00	X	X	0	0	0
(2) Michael DiMatteo...................................................................... Vice President	1.00 ................. 0.00	X	X	0	0	0
(3) Betsy Ricketts...................................................................... Secretary	1.00 ................. 0.00	X	X	0	0	0
(4) Amanda Malakoff...................................................................... Executive Dir.	1.00 ................. 0.00	X	X	0	0	0
(5) Katie Jones...................................................................... Fed Policy Comm	1.00 ................. 0.00	X		0	0	0
(6) Geoff Werth...................................................................... Fed Policy Comm	1.00 ................. 0.00	X		0	0	0
(7) Christine Harrison...................................................................... Member-at-Large	1.00 ................. 0.00	X		0	0	0
(8) Diane Berry...................................................................... Member-at-Large	1.00 ................. 0.00	X		0	0	0
(9) Bruce Bloom...................................................................... Operations Comm	1.00 ................. 0.00	X		0	0	0
(10) Jessi Rennekamp...................................................................... Communications	1.00 ................. 0.00	X		0	0	0
(11) Kate Segal...................................................................... State Policy Co	1.00 ................. 0.00	X		0	0	0
(12) Tricia Sterling...................................................................... Member	1.00 ................. 0.00	X		0	0	0
(13) Sheila Frame...................................................................... Member	1.00 ................. 0.00	X		0	0	0
(14) Hyonelle Youngson...................................................................... Member	1.00 ................. 0.00	X		0	0	0
(15) Kathryn Lowell...................................................................... Member	1.00 ................. 0.00	X		0	0	0
(16) Gina Cioffi...................................................................... Member	1.00 ................. 0.00	X		0	0	0
(17) Curt Oltmans...................................................................... Member	1.00 ................. 0.00	X		0	0	0

Form 990 (2021)

Page 8

Part VII

Section A. Officers, Directors, Trustees, Key Employees, and Highest Compensated Employees (continued)

(A) Name and title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)		(D) Reportable compensation from the organization (W-2/1099-MISC/1099-NEC)	(E) Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC)	(F) Estimated amount of other compensation from the organization and related organizations
(A) Name and title
(18) Brent Fisk........................................................................ Member	1.00 .......................0.00	X		0	0	0
(19) Sasha Damouni Ellis........................................................................ Member	1.00 .......................0.00	X		0	0	0
(20) Davelyn Hood........................................................................ Member	1.00 .......................0.00	X		0	0	0
(21) Ramon Coronado........................................................................ Member	1.00 .......................0.00	X		0	0	0
(22) Emily McGinnis........................................................................ Member	1.00 .......................0.00	X		0	0	0
(23) Andrea Wilkinson........................................................................ Member	1.00 .......................0.00	X		0	0	0
(24) Kerryn Lawson........................................................................ Treasurer	1.00 .......................0.00	X	X	0	0	0

1b	Sub-Total................
c	Total from continuation sheets to Part VII, Section A....
d	Total (add lines 1b and 1c)...........

Total number of individuals (including but not limited to those listed above) who received more than $100,000 of reportable compensation from the organization MediumBullet

Yes

Did the organization list any former officer, director or trustee, key employee, or highest compensated employee on line 1a? If "Yes," complete Schedule J for such individual ..............

For any individual listed on line 1a, is the sum of reportable compensation and other compensation from the organization and related organizations greater than $150,000? If "Yes," complete Schedule J for such
individual...........................

Did any person listed on line 1a receive or accrue compensation from any unrelated organization or individual for services rendered to the organization? If "Yes," complete Schedule J for such person ........

Section B. Independent Contractors

Complete this table for your five highest compensated independent contractors that received more than $100,000 of compensation from the organization. Report compensation for the calendar year ending with or within the organization’s tax year.

(A) Name and business address	(B) Description of services	(C) Compensation
KPM Group 1455 Pennsylvania Ave NW Ste 1150 Washington,DC20004	Management, Recruitment	219,200




2 Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization 1

Form 990 (2021)

Page 9

Part VIII

Statement of Revenue

Check if Schedule O contains a response or note to any line in this Part VIII.............

(A)
Total revenue

(B)
Related or
exempt
function
revenue

(D)
Revenue
excluded from
tax under sections
512 - 514

1a	Federated campaigns..		1a
b	Membership dues..		1b	401,249
c	Fundraising events..		1c
d	Related organizations		1d
e	Government grants (contributions)		1e

f	All other contributions, gifts, grants, and similar amounts not included above		1f

g	Noncash contributions included in lines 1a - 1f:$		1g

h Total. Add lines 1a-1f.......		401,249

		Business Code
2a
b
c
d
e
f	All other program service revenue.
g	Total. Add lines 2a–2f .....		0

3 Investment income (including dividends, interest, and othersimilar amounts) ......			0
4 Income from investment of tax-exempt bond proceeds			0
5 Royalties...........			0
		(ii) Personal	(i) Real
6a	Gross rents			6a
b	Less: rental expenses			6b
c	Rental income or (loss)			6c
d	Net rental income or (loss).......			0
		(ii) Other	(i) Securities
7a	Gross amount from sales of assets other than inventory			7a
b	Less: cost or other basis and sales expenses			7b
c	Gain or (loss)			7c
d	Net gain or (loss).........			0
8a	Gross income from fundraising events (not including $ of contributions reported on line 1c). See Part IV, line 18 ....
			8a
b	Less: direct expenses ...		8b
c	Net income or (loss) from fundraising events..			0
9a	Gross income from gaming activities. See Part IV, line 19 ...
			9a
b	Less: direct expenses ...		9b
c	Net income or (loss) from gaming activities..			0
10a	Gross sales of inventory, less returns and allowances ..
			10a
b	Less: cost of goods sold ..		10b
c	Net income or (loss) from sales of inventory..			0
Business Code			Miscellaneous Revenue
11a
b
c
d	All other revenue ....
e	Total. Add lines 11a–11d ......			0
12	Total revenue. See instructions.....			401,249

Form 990 (2021)

Page 10

Part IX

Statement of Functional Expenses

Section 501(c)(3) and 501(c)(4) organizations must complete all columns. All other organizations must complete column (A).Check if Schedule O contains a response or note to any line in this Part IX..............

Do not include amounts reported on lines 6b, 7b, 8b, 9b, and 10b of Part VIII.		(A) Total expenses	(B) Program service expenses	(C) Management and general expenses	(D) Fundraising expenses

1	Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 ....	0
2	Grants and other assistance to domestic individuals. See Part IV, line 22 ...........	0
3	Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, lines 15 and 16. .............	0
4	Benefits paid to or for members .......	0
5	Compensation of current officers, directors, trustees, and key employees ...........	0
6	Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .........	0
7	Other salaries and wages........	0
8	Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) ....	0
9	Other employee benefits .......	0
10	Payroll taxes ...........	0
11	Fees for services (non-employees):
a	Management ......	200,000		200,000
b	Legal .........	7,787		7,787
c	Accounting ...........	0
d	Lobbying ...........	15,000	15,000
e	Professional fundraising services. See Part IV, line 17	0
f	Investment management fees ......	0
g	Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O)	87,310	87,260	50
12	Advertising and promotion ....	0
13	Office expenses .......	0
14	Information technology ......	0
15	Royalties ..	0
16	Occupancy ...........	0
17	Travel ............	0
18	Payments of travel or entertainment expenses for any federal, state, or local public officials .	0
19	Conferences, conventions, and meetings ....	0
20	Interest ...........	0
21	Payments to affiliates .......	0
22	Depreciation, depletion, and amortization ..	0
23	Insurance ...	0
24	Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a
b
c
d
e	All other expenses	0
25	Total functional expenses. Add lines 1 through 24e	310,097	102,260	207,837	0
26	Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here if following SOP 98-2 (ASC 958-720).

Form 990 (2021)

Page 11

Part X

Balance Sheet

Check if Schedule O contains a response or note to any line in this Part IX..............

				(A) Beginning of year		(B) End of year

1	Cash–non-interest-bearing ........			1	91,152
2	Savings and temporary cash investments .........			2	0
3	Pledges and grants receivable, net ......			3	0
4	Accounts receivable, net .............			4	0
5	Loans and other receivables from any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .......
				5	0
6	Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), and persons described in section 4958(c)(3)(B) ...
				6	0
7	Notes and loans receivable, net ...........			7	0
8	Inventories for sale or use ............			8	0
9	Prepaid expenses and deferred charges ......			9	0
10a	Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D	10a
b	Less: accumulated depreciation	10b		10c	0
11	Investments—publicly traded securities .			11	0
12	Investments—other securities. See Part IV, line 11 .....			12	0
13	Investments—program-related. See Part IV, line 11 ..			13	0
14	Intangible assets ...............			14	0
15	Other assets. See Part IV, line 11 ...........			15	0
16	Total assets. Add lines 1 through 15 (must equal line 33)...		0	16	91,152

17	Accounts payable and accrued expenses .....		17
18	Grants payable ...		18
19	Deferred revenue .........		19
20	Tax-exempt bond liabilities .........		20
21	Escrow or custodial account liability. Complete Part IV of Schedule D		21
22	Loans and other payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .........
			22
23	Secured mortgages and notes payable to unrelated third parties ..		23
24	Unsecured notes and loans payable to unrelated third parties ..		24
25	Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24). Complete Part X of Schedule D		25
26	Total liabilities. Add lines 17 through 25..	0	26	0

	Organizations that follow FASB ASC 958, check here and complete lines 27, 28, 32, and 33.
27	Net assets without donor restrictions ..........		27
28	Net assets with donor restrictions ...........		28
	Organizations that do not follow FASB ASC 958, check here and complete lines 29 through 33.
29	Capital stock or trust principal, or current funds .....		29
30	Paid-in or capital surplus, or land, building or equipment fund ...		30
31	Retained earnings, endowment, accumulated income, or other funds		31	91,152
32	Total net assets or fund balances ...........	0	32	91,152
33	Total liabilities and net assets/fund balances ........	0	33	91,152

Form 990 (2021)

Page 12

Part XI

Reconcilliation of Net Assets

Check if Schedule O contains a response or note to any line in this Part XI..............

Total revenue (must equal Part VIII, column (A), line 12) ............

401,249

Total expenses (must equal Part IX, column (A), line 25) ............

310,097

Revenue less expenses. Subtract line 2 from line 1 ..............

91,152

Net assets or fund balances at beginning of year (must equal Part X, line 32, column (A)) ..

Net unrealized gains (losses) on investments ...............

Donated services and use of facilities .................

Investment expenses .....................

Prior period adjustments .....................

Other changes in net assets or fund balances (explain in Schedule O) ........

Net assets or fund balances at end of year. Combine lines 3 through 9 (must equal Part X, line 32, column (B))

91,152

Part XII

Financial Statements and Reporting

Check if Schedule O contains a response or note to any line in this Part XII.............

Yes

Accounting method used to prepare the Form 990: Cash Accrual Other
If the organization changed its method of accounting from a prior year or checked "Other," explain on
Schedule O.

Were the organization’s financial statements compiled or reviewed by an independent accountant?

If ‘Yes,’ check a box below to indicate whether the financial statements for the year were compiled or reviewed on a separate basis, consolidated basis, or both:

Separate basis Consolidated basis Both consolidated and separate basis

Were the organization’s financial statements audited by an independent accountant?

If ‘Yes,’ check a box below to indicate whether the financial statements for the year were audited on a separate basis, consolidated basis, or both:

Separate basis Consolidated basis Both consolidated and separate basis

If "Yes," to line 2a or 2b, does the organization have a committee that assumes responsibility for oversight of the audit, review, or compilation of its financial statements and selection of an independent accountant?

If the organization changed either its oversight process or selection process during the tax year, explain in Schedule O.

As a result of a federal award, was the organization required to undergo an audit or audits as set forth in the Single Audit Act and OMB Circular A-133?

If "Yes," did the organization undergo the required audit or audits? If the organization did not undergo the required audit or audits, explain why in Schedule O and describe any steps taken to undergo such audits.

Form 990 (2021)

Additional Data

Software ID:	21013475
Software Version:	2021v4.1

Form 990, Special Condition Description:

Special Condition Description

- TIN:

Schedule B
(Form 990)

Department of the Treasury
Internal Revenue Service

Schedule of Contributors

Attach to Form 990, 990-EZ, or 990-PF.

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2021

Name of the organization

Rare Disease Company Coalition Inc

Employer identification number

86-2999172

Organization type (check one):

Filers of:

Section:

Form 990 or 990-EZ

501(c)( ) (enter number) organization

4947(a)(1) nonexempt charitable trust not treated as a private foundation

527 political organization

Form 990-PF

501(c)(3) exempt private foundation

4947(a)(1) nonexempt charitable trust treated as a private foundation

501(c)(3) taxable private foundation

Check if your organization is covered by the General Rule or a Special Rule.
Note: Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.

General Rule

For an organization filing Form 990, 990-EZ, or 990-PF that received, during the year, contributions totaling $5,000 or more (in money or other property) from any one contributor. Complete Parts I and II. See instructions for determining a contributor's total contributions.

Special Rules

For an organization described in section 501(c)(3) filing Form 990 or 990-EZ that met the 33¹/3% support test of the regulations
under sections 509(a)(1) and 170(b)(1)(A)(vi), that checked Schedule A (Form 990 or 990-EZ), Part II, line 13, 16a, or 16b, and that received from any one contributor, during the year, total contributions of the greater of (1) $5,000 or (2) 2% of the amount on (i) Form 990, Part VIII, line 1h, or (ii) Form 990-EZ, line 1. Complete Parts I and II.

For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, total contributions of more than $1,000 exclusively for religious, charitable, scientific, literary, or educational purposes, or for the prevention of cruelty to children or animals. Complete Parts I, II, and III.

For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, contributions exclusively for religious, charitable, etc., purposes, but no such contributions totaled more than $1,000. If this box is checked, enter here the total contributions that were received during the year for an exclusively religious, charitable, etc., purpose. Don't complete any of the parts unless the General Rule applies to this organization because it received nonexclusively religious, charitable, etc., contributions totaling $5,000 or more during the year ......... Arrow Bullet

Caution: An organization that isn't covered by the General Rule and/or the Special Rules doesn't file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its Form 990-EZ
or on its Form 990PF, Part I, line 2, to certify that it doesn't meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).

For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.

Cat. No. 30613XSchedule B (Form 990) (2021)

Schedule B (Form 990) (2021) Page 2

Name of organization Rare Disease Company Coalition Inc

Part I Contributors	Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
RESTRICTED	,	$ RESTRICTED	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
Schedule B (Form 990) (2021)

Schedule B (Form 990) (2021)

Page 3

Name of organization Rare Disease Company Coalition Inc		Employer identification number 86-2999172

Part II	Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
Schedule B (Form 990) (2021)

Schedule B (Form 990) (2021)

Page 4


Name of organization Rare Disease Company Coalition Inc			Employer identification number 86-2999172
Part III Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) $ Use duplicate copies of Part III if additional space is needed.

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

Schedule B (Form 990) (2021)

Additional Data

Software ID:	21013475
Software Version:	2021v4.1

- TIN:

SCHEDULE C
(Form 990)

Department of the Treasury
Internal Revenue Service

Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527

SchCMd Bullet

Complete if the organization is described below. SchCMd Bullet

Attach to Form 990 or Form 990-EZ.
SchCMd Bullet

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2021

Open to Public
Inspection

If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet

Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet

Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet

Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet

Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet

Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet

Section 501(c)(4), (5), or (6) organizations: Complete Part III.

Name of the organization

Rare Disease Company Coalition Inc

Employer identification number

86-2999172

Part I-A

Complete if the organization is exempt under section 501(c) or is a section 527 organization.

Provide a description of the organization’s direct and indirect political campaign activities in Part IV. See instructions for definition of “political campaign activities."

Political campaign activity expenditures. See instructions .................................................................... SchCMd Bullet

Volunteer hours for political campaign activities. See instructions ..................................................................

Part I-B

Complete if the organization is exempt under section 501(c)(3).

Enter the amount of any excise tax incurred by the organization under section 4955 ................................ SchCMd Bullet

Enter the amount of any excise tax incurred by organization managers under section 4955 ....................... SchCMd Bullet

If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................

Yes No

Was a correction made? ......................................................................................................................

Yes No

If "Yes," describe in Part IV.

Part I-C

Complete if the organization is exempt under section 501(c), except section 501(c)(3).

Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... SchCMd Bullet

Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................ SchCMd Bullet

Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b........... SchCMd Bullet

Did the filing organization file Form 1120-POL for this year? ...................................................................

Yes No

Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.

(a) Name	(b) Address	(c) EIN	(d) Amount paid from filing organization's funds. If none, enter -0-.	(e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6

For Paperwork Reduction Act Notice, see the instructions for Form 990.

Cat. No. 50084S

Schedule C (Form 990) 2021

Page 2

Part II-A

Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).

A Check SchCMd Bullet

if the filing organization belongs to an affiliated group (and list in Part IV each affiliated group member's name, address, EIN, expenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet

if the filing organization checked box A and "limited control" provisions apply.

Limits on Lobbying Expenditures (The term "expenditures" means amounts paid or incurred.)		(b) Affiliated group totals
1a	Total lobbying expenditures to influence public opinion (grass roots lobbying) ......................
b	Total lobbying expenditures to influence a legislative body (direct lobbying) ........................
c	Total lobbying expenditures (add lines 1a and 1b) ............................................................
d	Other exempt purpose expenditures ...............................................................................
e	Total exempt purpose expenditures (add lines 1c and 1d) ..................................................
f	Lobbying nontaxable amount. Enter the amount from the following table in both columns.
	If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
	Not over $500,00020% of the amount on line 1e.
	Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
	Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
	Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
	Over $17,000,000$1,000,000.

g	Grassroots nontaxable amount (enter 25% of line 1f) .................................................
h	Subtract line 1g from line 1a. If zero or less, enter -0-. ................................................
i	Subtract line 1f from line 1c. If zero or less, enter -0-. ................................................
j	If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting section 4911 tax for this year? ...................................................................................................................	Yes No

4-Year Averaging Period Under Section 501(h) (Some organizations that made a section 501(h) election do not have to complete all of the five columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
	Calendar year (or fiscal year beginning in)	(a) 2018	(b) 2019	(c) 2020	(d) 2021	(e) Total

2a	Lobbying nontaxable amount

b	Lobbying ceiling amount (150% of line 2a, column(e))

c	Total lobbying expenditures

d	Grassroots nontaxable amount

e	Grassroots ceiling amount (150% of line 2d, column (e))

f	Grassroots lobbying expenditures

Schedule C (Form 990) 2021

Page 3

Part II-B

Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).

For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.

(a)

Yes|No

(b)

Amount

During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:

Volunteers? ...........................................................................................................

Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........

Media advertisements? ...................................................................................................

Mailings to members, legislators, or the public? .............................................................................

Publications, or published or broadcast statements? ...........................................................

Grants to other organizations for lobbying purposes? ..........................................................

Direct contact with legislators, their staffs, government officials, or a legislative body? .......................

Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................

Other activities? ...................................................................................................................

Total. Add lines 1c through 1i ....................................................................................................

Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....

If "Yes," enter the amount of any tax incurred under section 4912 ...........................................

If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................

If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................

Part III-A

Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).

Yes

Were substantially all (90% or more) dues received nondeductible by members? ...............................................

Yes

Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................

Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................

Part III-B

Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."

Dues, assessments and similar amounts from members ......................................................................

Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).

Current year .............................................................................................................................

Carryover from last year ............................................................................................................

Total ...........................................................................................................................................

Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .

If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................

Taxable amount of lobbying and political expenditures. See Instructions .........................................

Part IV

Supplemental Information

Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.

Return Reference	Explanation

Schedule C (Form 990) 2021

Additional Data

Software ID:	21013475
Software Version:	2021v4.1

- TIN:

Schedule L
(Form 990)

Department of the Treasury
Internal Revenue Service

Transactions with Interested Persons

Complete if the organization answered "Yes" on Form 990, Part IV, lines 25a, 25b, 26, 27, 28a, 28b, or 28c, or Form 990-EZ, Part V, line 38a or 40b.
MediumBullet

Attach to Form 990 or Form 990-EZ.
MediumBullet

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2021

Open to Public Inspection

Name of the organization

Rare Disease Company Coalition Inc

Employer identification number

86-2999172

Part I

Excess Benefit Transactions (section 501(c)(3), section 501(c)(4), and section 501(c)(29) organizations only).
Complete if the organization answered "Yes" on Form 990, Part IV, line 25a or 25b, or Form 990-EZ, Part V, line 40b.

1(a) Name of disqualified person	(c) Description of transaction	(d) Corrected?
1(a) Name of disqualified person	(c) Description of transaction	Yes	No

Enter the amount of tax incurred by the organization managers or disqualified persons during the year under section 4958. ........................... Bullet Image

Enter the amount of tax, if any, on line 2, above, reimbursed by the organization ........ Bullet Image

Part II

Loans to and/or From Interested Persons.
Complete if the organization answered "Yes" on Form 990-EZ, Part V, line 38a, or Form 990, Part IV, line 26; or if the organization reported an amount on Form 990, Part X, line 5, 6, or 22

(a) Name of interested person	(b) Relationship with organization	(c) Purpose of loan	(d) Loan to or from the organization?		(e) Original principal amount	(f) Balance due	(g) In default?		(h) Approved by board or committee?		(i) Written agreement?
(a) Name of interested person	(b) Relationship with organization	(c) Purpose of loan	To	From	(e) Original principal amount	(f) Balance due	Yes	No	Yes	No	Yes	No






Total ............... $

Part III

Grants or Assistance Benefiting Interested Persons.
Complete if the organization answered "Yes" on Form 990, Part IV, line 27.

(a) Name of interested person	(b) Relationship between interested person and the organization	(c) Amount of assistance	(d) Type of assistance	(e) Purpose of assistance

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.

Cat. No. 50056A

Schedule L (Form 990) 2021

Page 2

Part IV

Business Transactions Involving Interested Persons.
Complete if the organization answered "Yes" on Form 990, Part IV, line 28a, 28b, or 28c.

(a) Name of interested person	(b) Relationship between interested person and the organization	(c) Amount of transaction	(d) Description of transaction	(e) Sharing of organization's revenues?
(a) Name of interested person		(c) Amount of transaction	(d) Description of transaction	Yes	No
(1) Kerryn Lawson	35% controlled	219,200	Independent Contractor		No

Part V

Supplemental Information
Provide additional information for responses to questions on Schedule L (see instructions).

Return Reference	Explanation

Schedule L (Form 990) 2021

Additional Data

Software ID:	21013475
Software Version:	2021v4.1

- TIN:

SCHEDULE O
(Form 990)

Department of the Treasury
Internal Revenue Service

Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
MediumBullet

Attach to Form 990 or 990-EZ.
MediumBullet

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2021

Open to Public
Inspection

Name of the organization

Rare Disease Company Coalition Inc

Employer identification number

86-2999172

Return Reference	Explanation
Form 990, Part VI, Line 6: Explanation of Classes of Members or Shareholder	The Coalition has preclinical/clinical member companies with no drugs/indications on market and also commercial member companies with one or more drugs/indications on market.
Form 990, Part VI, Line 11b: Form 990 Review Process	Chairman/Treasurer review the Form 990 before filing.
Form 990, Part VI, Line 19: Other Organization Documents Publicly Available	No documents available to the public.

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.

Cat. No. 51056K

Schedule O (Form 990) 2021

Additional Data

Software ID:	21013475
Software Version:	2021v4.1