EIN 52-1214782

Immune Deficiency Foundation (IDF)

IRS 501(c) type
501(c)(3)
Num. employees
44
City
Hanover
Year formed
1980
Most recent tax filings
2022-12-01
Description
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Total revenues
$8,852,448
2022
Total expenses
$7,936,471
2022
Total assets
$14,567,941
2022
Num. employees
44
2022

Program areas at IDF

Idf provided educational programs for patients and families living with primary immunodeficiencies (pi). In 2022, approximately 7,798 individuals attended more than 335 presentations. These included idf forums and education meetings, idf get connected group meetings, teen and young adult activities, the idf pi conference and scid compass summit. More than 103,209 idf educational materials were distributed and 881,747 users accessed the idf website for information and support.
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, providing information and resources to over 590 medical professionals, 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. 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 2022, there were 4 abstracts accepted and featured at national medical conferences and 10 manuscripts published in peer review scientific journals, all using usidnet data. Because medical research is a priority, the idf research grant program funded 4 research grants in 2022 totaling over 140,000.
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 information requests from more than 1,453 individuals seeking education, information, and assistance regarding over 1,890 topics. 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. In 2022 idf succeeded in securing a permanent medicare benefit for thousands of pi patients to receive home ivig after ten years of legislative advocacy. At idf advocacy day, 240 individuals met with and sent messages to 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.
Other services to patients and families

Grants made by IDF

GranteeGrant descriptionAmount
Baylor College of Medicine (BCM)Research$50,000
Boston Children's HospitalResearch$40,763
The Feinstein Institutes for Medical ResearchResearch$25,000
...and 1 more grant made

Who funds Immune Deficiency Foundation (IDF)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Vanguard Charitable Endowment ProgramFor Recipient's Exempt Purpose$25,000
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$21,750
Lisa and Douglas Goldman FundGeneral Operating Support$15,000
...and 29 more grants received totalling $146,884

Personnel at IDF

NameTitleCompensation
Jorey BerryPresident and Chief Executive Officer$215,354
Sarah RoseChief Financial Officer$134,904
Tammy C. BlackChief Communications Officer$134,742
Brian C. LloydChief Technology Officer
Lynn H. AlbizoVice President of Public Policy$121,346
...and 18 more key personnel

Financials for IDF

RevenuesFYE 12/2022
Total grants, contributions, etc.$8,654,145
Program services$68,746
Investment income and dividends$299,863
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-170,306
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$8,852,448

Form 990s for IDF

Fiscal year endingDate received by IRSFormPDF link
2022-122023-06-13990View PDF
2021-122022-06-22990View PDF
2020-122021-07-27990View PDF
2019-122021-02-17990View PDF
2018-122019-10-12990View PDF
...and 9 more Form 990s
Data update history
January 21, 2024
Updated personnel
Identified 10 new personnel
October 26, 2023
Received grants
Identified 2 new grant, including a grant for $5,588 from The Blackbaud Giving Fund
August 19, 2023
Posted financials
Added Form 990 for fiscal year 2021
August 3, 2023
Posted financials
Added Form 990 for fiscal year 2022
July 27, 2023
Updated personnel
Identified 3 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchLobbyingPeer-to-peer fundraisingNational levelReceives government fundingEndowed supportCommunity engagement / volunteeringFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
7550 Teague Rd Suite 220
Hanover, MD 21706
Website URL
primaryimmune.org/ 
Phone
(800) 296-4433
Facebook page
ImmuneDeficiencyFoundation 
Twitter profile
@idfcommunity 
IRS details
EIN
52-1214782
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1980
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G40: Diseases of Specific Organs
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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