Attach to Form 990 or Form 990-EZ.
Go to
www.irs.gov/Form990 for instructions and the latest information.
| (i) Name of supported organization | (ii) EIN | (iii) Type of organization (described on lines 1- 10 above (see instructions)) | (iv) Is the organization listed in your governing document? | (v) Amount of monetary support (see instructions) | (vi) Amount of other support (see instructions) | |
|---|---|---|---|---|---|---|
| Yes | No | |||||
|
Total |
||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") .. | 7,889,910 | 7,285,264 | 5,305,252 | 8,943,841 | 6,486,028 | 35,910,295 |
| 2 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf.... | ||||||
| 3 | The value of services or facilities furnished by a governmental unit to the organization without charge.. | ||||||
| 4 | Total. Add lines 1 through 3 | 7,889,910 | 7,285,264 | 5,305,252 | 8,943,841 | 6,486,028 | 35,910,295 |
| 5 | The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f).. | 17,547,458 | |||||
| 6 | Public support. Subtract line 5 from line 4. | 18,362,837 | |||||
Calendar year
(or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 7 | Amounts from line 4.. | 7,889,910 | 7,285,264 | 5,305,252 | 8,943,841 | 6,486,028 | 35,910,295 |
| 8 | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources... | 95,177 | 285,001 | 499,810 | 329,215 | 194,897 | 1,404,100 |
| 9 | Net income from unrelated business activities, whether or not the business is regularly carried on.. | ||||||
| 10 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.).. | 19,008 | 31,510 | 1,320 | 37,061 | 88,899 | |
| 11 | Total support. Add lines 7 through 10 | 37,403,294 | |||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 1 | Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") . | ||||||
| 2 | Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose | ||||||
| 3 | Gross receipts from activities that are not an unrelated trade or business under section 513 ..... | ||||||
| 4 | Tax revenues levied for the organization's benefit and either paid to or expended on its behalf... | ||||||
| 5 | The value of services or facilities furnished by a governmental unit to the organization without charge | ||||||
| 6 | Total. Add lines 1 through 5 | ||||||
| 7a | Amounts included on lines 1, 2, and 3 received from disqualified persons | ||||||
| b | Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year. | ||||||
| c | Add lines 7a and 7b.. | ||||||
| 8 | Public support. (Subtract line 7c from line 6.) | ||||||
Calendar year (or fiscal year beginning in) ![]() |
(a) 2016 | (b) 2017 | (c) 2018 | (d) 2019 | (e) 2020 | (f) Total | |
|---|---|---|---|---|---|---|---|
| 9 | Amounts from line 6... | ||||||
| 10a | Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources.. | ||||||
| b | Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975. | ||||||
| c | Add lines 10a and 10b. | ||||||
| 11 | Net income from unrelated business activities not included in line 10b, whether or not the business is regularly carried on. | ||||||
| 12 | Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) .. | ||||||
| 13 | Total support. (Add lines 9, 10c, 11, and 12.).. | ||||||
| Section A - Adjusted Net Income | (A) Prior Year |
(B) Current Year (optional) |
||||
| 1 | Net short-term capital gain | 1 | ||||
| 2 | Recoveries of prior-year distributions | 2 | ||||
| 3 | Other gross income (see instructions) | 3 | ||||
| 4 | Add lines 1 through 3 | 4 | ||||
| 5 | Depreciation and depletion | 5 | ||||
| 6 | Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions) | 6 | ||||
| 7 | Other expenses (see instructions) | 7 | ||||
| 8 | Adjusted Net Income (subtract lines 5, 6 and 7 from line 4) | 8 | ||||
| Section B - Minimum Asset Amount | (A) Prior Year |
(B) Current Year (optional) |
||||
| 1 | Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year): | 1 | ||||
| a | Average monthly value of securities | 1a | ||||
| b | Average monthly cash balances | 1b | ||||
| c | Fair market value of other non-exempt-use assets | 1c | ||||
| d | Total (add lines 1a, 1b, and 1c) | 1d | ||||
| e |
Discount claimed for blockage or other factors (explain in detail in Part VI): |
|||||
| 2 | Acquisition indebtedness applicable to non-exempt use assets | 2 | ||||
| 3 | Subtract line 2 from line 1d | 3 | ||||
| 4 | Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions). | 4 | ||||
| 5 | Net value of non-exempt-use assets (subtract line 4 from line 3) | 5 | ||||
| 6 | Multiply line 5 by 0.035 | 6 | ||||
| 7 | Recoveries of prior-year distributions | 7 | ||||
| 8 | Minimum Asset Amount (add line 7 to line 6) | 8 | ||||
| Section C - Distributable Amount | Current Year | |||||
| 1 | Adjusted net income for prior year (from Section A, line 8, Column A) | 1 | ||||
| 2 | Enter 85% of line 1 | 2 | ||||
| 3 | Minimum asset amount for prior year (from Section B, line 8, Column A) | 3 | ||||
| 4 | Enter greater of line 2 or line 3 | 4 | ||||
| 5 | Income tax imposed in prior year | 5 | ||||
| 6 | Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions) | 6 | ||||
| Section D - Distributions | Current Year | |
|---|---|---|
| 1 Amounts paid to supported organizations to accomplish exempt purposes | 1 | |
|
2
Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity |
2 | |
| 3 Administrative expenses paid to accomplish exempt purposes of supported organizations | 3 | |
| 4 Amounts paid to acquire exempt-use assets | 4 | |
| 5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI) | 5 | |
| 6 Other distributions (describe in Part VI). See instructions | 6 | |
| 7Total annual distributions. Add lines 1 through 6. | 7 | |
|
8
Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions |
8 | |
| 9 Distributable amount for 2020 from Section C, line 6 | 9 | |
| 10 Line 8 amount divided by Line 9 amount | 10 | |
| Section E - Distribution Allocations (see instructions) |
(i) Excess Distributions |
(ii) Underdistributions Pre-2020 |
(iii) Distributable Amount for 2020 |
|
|---|---|---|---|---|
| 1 Distributable amount for 2020 from Section C, line 6 | ||||
|
2
Underdistributions, if any, for years prior to 2019 (reasonable cause required-- explain in Part VI). See instructions. |
||||
| 3 Excess distributions carryover, if any, to 2020: | ||||
| a From 2015....... | ||||
| b From 2016....... | ||||
| c From 2017....... | ||||
| d From 2018....... | ||||
| e From 2019....... | ||||
| fTotal of lines 3a through e | ||||
| g Applied to underdistributions of prior years | ||||
| h Applied to 2020 distributable amount | ||||
|
i
Carryover from 2015 not applied (see instructions) |
||||
| j Remainder. Subtract lines 3g, 3h, and 3i from line 3f. | ||||
| 4Distributions for 2020 from Section D, line 7: | ||||
| $ | ||||
| a Applied to underdistributions of prior years | ||||
| b Applied to 2020 distributable amount | ||||
| c Remainder. Subtract lines 4a and 4b from line 4. | ||||
|
5
Remaining underdistributions for years prior to 2020, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions. |
||||
|
6
Remaining underdistributions for 2020. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions. |
||||
|
7 Excess distributions carryover to 2021. Add lines 3j and 4c. |
||||
| 8 Breakdown of line 7: | ||||
| a Excess from 2016..... | ||||
| b Excess from 2017..... | ||||
| c Excess from 2018..... | ||||
| d Excess from 2019..... | ||||
| e Excess from 2020..... | ||||
| Facts And Circumstances Test |
|---|
| Return Reference | Explanation |
|---|---|
| PART II, LINE 10 | 88,899 |
| Software ID: | |
| Software Version: |
Attach to Form 990 or 990-EZ.
Go to www.irs.gov/Form990 for the latest information.
| Return Reference | Explanation |
|---|---|
| FORM 990, PAGE 2, PART III, LINE 4B | THE PRIMARY IMMUNODEFICIENCY COMMUNITY TURNS TO IDF FOR INDIVIDUAL ASSISTANCE TO ANSWER INSURANCE QUESTIONS, LOCATE A SPECIALIST IN THEIR AREA, FIND INFORMATION ABOUT TREATMENT, AND LEARN MORE ABOUT THEIR DIAGNOSIS. IDF'S PATIENT ADVOCACY SPECIALISTS FULFILLED MORE THAN 9,765 REQUESTS FROM INDIVIDUALS AND FAMILIES SEEKING EDUCATION, INFORMATION, AND ASSISTANCE. IDF FILLED 399 REQUESTS TO LOCATE A SPECIALIST; THE MOST COMMON INQUIRY FROM CONSTITUENTS. IDF WORKS THROUGHOUT THE YEAR AT THE FEDERAL AND STATE LEVEL TO EDUCATE LAWMAKERS AND THE PUBLIC ABOUT ISSUES THAT IMPACT THE PI COMMUNITY. A STRONG VOLUNTEER GRASSROOTS ADVOCACY NETWORK WORKS TO EDUCATE POLICYMAKERS ABOUT ISSUES AFFECTING THOSE WITH PI. AT IDF ADVOCACY DAY, 199 INDIVIDUALS MET WITH MEMBERS OF CONGRESS TO ENSURE THAT PEOPLE WITH PI ARE ABLE TO LIVE HEALTHY AND PRODUCTIVE LIVES WITH EXCELLENT TREATMENT OPTIONS AND ACCESS TO THE MOST APPROPRIATE HEALTHCARE AVAILABLE. |
| FORM 990, PAGE 2, PART III, LINE 4C | IN AN EFFORT TO IMPROVE THE DIAGNOSIS, TREATMENT, AND CARE OF THOSE AFFECTED BY PI, IDF HAS SEVERAL INITIATIVES TO PROVIDE RESOURCES DIRECTLY TO THE MEDICAL COMMUNITY, INCLUDING EXHIBITING AT 7 MEDICAL CONFERENCES AND ADMINISTERING A CONSULTING IMMUNOLOGIST PROGRAM THAT ALLOWS PHYSICIANS TO CONSULT WITH AN EXPERT CLINICAL IMMUNOLOGIST ABOUT PATIENT-SPECIFIC QUESTIONS TO OBTAIN VALUABLE DIAGNOSTIC, TREATMENT, AND DISEASE MANAGEMENT INFORMATION. BECAUSE MEDICAL RESEARCH IS A PRIORITY, THE IDF RESEARCH GRANT PROGRAM FUNDED 7 RESEARCH GRANTS IN 2020. IDF EPHR, AN ONLINE PERSONAL HEALTH RECORD FOR 4,733 INDIVIDUALS WITH PI IS AN ONLINE TOOL THAT HELPS PATIENTS TAKE CHARGE OF THEIR HEALTH AND MANAGE THEIR INFORMATION IN ONE PLACE. PI CONNECT, A RESEARCH NETWORK ACCESSED THROUGH IDF EPHR, GREW TO 2,711 USERS IN 2020. PI CONNECT USERS CONSENT INTO THE UNITED STATES IMMUNODEFICIENCY NETWORK (USIDNET) PATIENT REGISTRY, WHICH UTILIZED A NETWORK OF LEADING IMMUNOLOGISTS WHO COLLABORATE TO ADVANCE KNOWLEDGE IN THE FIELD OF PI. A KEY COMPONENT IS A PATIENT- CONSENTED REGISTRY, WHICH HAS 7,870 REGISTRANTS. IDF CONDUCTS NATIONAL SURVEYS AND FOCUS GROUPS OF PATIENTS, PHYSICIANS, AND OTHER HEALTHCARE PROFESSIONALS, BUILDING A COLLECTION OF QUANTIFIABLE DATA RELATED TO PRIMARY IMMUNODEFICIENCIES. IN 2020, IDF LAUNCHED A COVID-19 SURVEY, REACHING OUT TO PARTICIPANTS MONTHLY TO GATHER DATA. |
| FORM 990, PAGE 2, PART III, LINE 4D | OTHER SERVICES TO PATIENTS AND FAMILIES |
| FORM 990, PART VI | THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. IN ADDITION, THE FINANCIAL STATEMENTS ARE AVAILABLE ON THE WEBSITE. |
| FORM 990, PAGE 6, PART VI, LINE 11B | THE 990 IS REVIEWED BY THE CHIEF FINANCIAL OFFICER ONCE COMPLETED BY THE AUDITORS. ONCE THE CHIEF FINANCIAL OFFICER IS SATISFIED WITH THE ACCURACY, THE 990 IS THEN PASSED ONT TO THE PRESIDENT & CEO FOR REVIEW. AFTER THAT LEVEL OF REVIEW IS COMPLETE, IT IS THEN PASSED ON TO THE FINANCE COMMITTEE FOR APPROVAL. ONCE THAT HAPPENS IT IS REVIEWED AND ONCE ACCURATE, APPROVED BY THE BOARD OF TRUSTEES. |
| FORM 990, PAGE 6, PART VI, LINE 12C | EACH YEAR IDF REQUESTS THAT ALL BOARD OF TRUSTEE MEMBERS AND STAFF COMPLETE A CONFLICT OF INTEREST STATEMENT DISCLOSING ANY POTENTIAL CONFLICT THAT MAY EXIST. THESE ARE KEPT ON FILE IN THE IDF OFFICE. THE BOARD LIAISON/CFO DISTRIBUTES THE STATEMENT ANNUALLY FOR SIGNATURES TO THE BOARD. THE BOARD LIAISON/CFO, WOULD DISTRIBUTE TO ANY STAFF NECESSARY. THE BOARD LIAISON/CFO WOULD REVIEW AND WOULD BRING IT TO THE PRESIDENT & CEO'S ATTENTION IS THERE ARE CONFLICTS. ANY RESTRICTIONS, IF NECESSARY, WOULD BE MADE AT HIS LEVEL OR ABOVE, DEPENDING ON WHO/WHAT THE CONFLICT IS. |
| FORM 990, PAGE 6, PART VI, LINE 15A | THE PRESIDENT & CEO'S COMPENSATION IS REVIEWED AND DOCUMENTED BY THE PERSONNEL COMMITTEE. THE COMMITTEE REVIEWS WEBSITES SUCH AS SALARY.COM AND/OR REVIEWS OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK TO DETERMINE THE CORRECT SALARY FOR THE POSITION. THE COMPENSATION IS PRESENTED AND APPROVED BY THE FULL BOARD. THE PERSONNEL COMMITTEE INFORMS THE PRESIDENT & CEO, HUMAN RESOURCES, AND ACCOUNTING. FOR ALL EMPLOYEES, AN ANNUAL REVIEW IS CONDUCTED BY THE EMPLOYEE'S SUPERVISOR. BASED ON THIS REVIEW, IT IS DETERMINED IF THE PERSON GETS AN ANNUAL INCREASE BEYOND THE COST OF LIVING. REVIEW OF WEBSITES SUCH AS SALARY.COM AND/OR REVIEW OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK HELPS DETERMINE THE CORRECT SALARY FOR TEH POSITION. IF THE SUPERVISOR APPROVES AN INCREASE, PAPERWORK IS DRAWN UP AND SUBMITTED TO THE PRESIDENT & CEO FOR APPROVAL AND IS ALSO REVIEWED BY THE PERSONNEL COMMITTEE. ONCE APPROVAL IS COMPLETE, HUMAN RESOURCES AND ACCOUNTING ARE INFORMED OF THE INCREASE. THE EMPLOYEE IS NOTIFIED AS WELL. |
| FORM 990, PAGE 6, PART VI, LINE 15B | THE PRESIDENT & CEO'S COMPENSATION IS REVIEWED AND DOCUMENTED BY THE PERSONNEL COMMITTEE. THE COMMITTEE REVIEWS WEBSITES SUCH AS SALARY.COM AND/OR REVIEWS OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK TO DETERMINE THE CORRECT SALARY FOR THE POSITION. THE COMPENSATION IS PRESENTED AND APPROVED BY THE FULL BOARD. THE PERSONNEL COMMITTEE INFORMS THE PRESIDENT & CEO, HUMAN RESOURCES, AND ACCOUNTING. FOR ALL EMPLOYEES, AN ANNUAL REVIEW IS CONDUCTED BY THE EMPLOYEE'S SUPERVISOR. BASED ON THIS REVIEW, IT IS DETERMINED IF THE PERSON GETS AN ANNUAL INCREASE BEYOND THE COST OF LIVING. REVIEW OF WEBSITES SUCH AS SALARY.COM AND/OR REVIEW OF MATERIALS SUCH AS ASAE'S COMPENSATION AND BENEFITS STUDY BOOK HELPS DETERMINE THE CORRECT SALARY FOR TEH POSITION. IF THE SUPERVISOR APPROVES AN INCREASE, PAPERWORK IS DRAWN UP AND SUBMITTED TO THE PRESIDENT & CEO FOR APPROVAL AND IS ALSO REVIEWED BY THE PERSONNEL COMMITTEE. ONCE APPROVAL IS COMPLETE, HUMAN RESOURCES AND ACCOUNTING ARE INFORMED OF THE INCREASE. THE EMPLOYEE IS NOTIFIED AS WELL. |
| FORM 990, PAGE 6, PART VI, LINE 17 | NORTH DAKOTA, NEW HAMPSHIRE, NEW JERSEY, NEW YORK, OHIO, PENNSYLVANIA, RHODE ISLAND, TENNESSEE, VIRGINIA, WASHINGTON, WISCONSIN |
| FORM 990, PAGE 6, PART VI, LINE 19 | THE GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON REQUEST. IN ADDITION, THE FINANCIAL STATEMENTS ARE AVAILABLE ON THE WEBSITE. |
| FORM 990, PART IX, LINE 11G | 1,411,283 190,195 84,636 |
| FORM 990, PAGE 12, PART XII, LINE 2C | THE FINANCE COMMITTEE ASSUMES REPONSIBILITY FOR OVERSIGHT OF THE AUDIT AND SELECTION OF AN INDEPENDENT ACCOUNTANT. THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR. |
| Software ID: | |
| Software Version: |