EIN 20-2944028

National Fabry Disease Foundation

IRS 501(c) type
501(c)(3)
Num. employees
2
Year formed
2005
Most recent tax filings
2023-05-01
Description
The National Fabry Disease Foundation aims to ensure timely identification, diagnosis and treatment of individuals with Fabry Disease to prevent negative consequences and improve quality-of-life. The foundation provides education and awareness programs that emphasize the importance of early intervention, which can lead to better outcomes for patients. They also offer community support through daily communication channels such as phone calls, emails, and written correspondence.
Total revenues
$307,957
2023
Total expenses
$472,698
2023
Total assets
$521,056
2023
Num. employees
2
2023

Program areas at National Fabry Disease Foundation

Education and awareness: early intervention improves many adverse quality-of-life symptoms and extends patients' life expectancy. Our family and physician education programs help to ensure children and adults with Fabry Disease are recognized and diagnosed at the earliest age possible to receive appropriate management and treatment of their Disease. Our public education program is designed to reach undiagnosed individuals by raising awareness of the symptoms of Fabry Disease. We provided education and awareness about Fabry Disease in various forms such as our robust educational website at www.fabrydisease.org; our annual family education conference; monthly virtual family education meetings, various materials such as an educational Fabry symptoms presentation and educational calendar, a Fabry community landscape document, frequent educational posts on our facebook page of about 4,000 followers, periodic tweets on our twitter page, our periodic Fabry focus e-newsletter, and daily assistance via email and phone. We are in contact with over 1,300 adults with Fabry Disease by email. Reports from our patient-reported-outcomes survey program provides invaluable information to inform patients and physicians as well as providing insights to stimulate additional research. For april Fabry Disease awareness month, we increase awareness to provide daily social media and e-newsletter educational updates. Published literature indicates 10-20 times as many people have Fabry Disease than are currently diagnosed and undergoing treatment.
Community support: provide support and assistance to individuals with Fabry Disease and their families. Our community support program is directed to people living with Fabry Disease and their families. We provided daily phone calls, email and written correspondence to support individuals and families with Fabry Disease. We provided patients and families a free 24/7 hotline for counseling and referrals, purchased many journal articles to share with the community, provided transportation and other assistance to attend Fabry educational meetings, provided financial assistance for one-time or short term needs not covered by other programs, and continued to provide my-health-handbook-kits for emergency situations. We facilitated testing for diagnoses and access to treatment. We continued to add Fabry specialists to our find-a-fabry-specialist searchable database on our website.

Who funds National Fabry Disease Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Network for GoodUnrestricted$18,297
AmazonSmile FoundationGeneral Support$407
Pfizer FoundationMatching Gifts$50

Personnel at National Fabry Disease Foundation

NameTitleCompensation
Gerald WalterBoard Chair$109,200
Casey McKennaSenior Program Manager
Tracy MyattSecretary$0
Melanie WilsonTreasurer$0
Derek HalbergVice Chair$0

Financials for National Fabry Disease Foundation

RevenuesFYE 05/2023
Total grants, contributions, etc.$307,957
Program services$0
Investment income and dividends$0
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$0
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$307,957

Form 990s for National Fabry Disease Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-052023-10-13990View PDF
2022-052022-12-22990View PDF
2021-052021-10-11990View PDF
2020-052021-02-18990View PDF
2019-052020-01-10990View PDF
...and 8 more Form 990s
Data update history
November 29, 2023
Posted financials
Added Form 990 for fiscal year 2023
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2022
May 11, 2023
Received grants
Identified 2 new grant, including a grant for $6,000 from Charities Aid Foundation of America
August 15, 2022
Posted financials
Added Form 990 for fiscal year 2021
June 27, 2022
Updated personnel
Identified 1 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchTax deductible donationsAccepts online donations
General information
Address
144 E King St 1419
Hillsborough, NC 27278
Metro area
Durham-Chapel Hill, NC
County
Orange County, NC
Website URL
fabrydisease.org/ 
Phone
(919) 732-2799
IRS details
EIN
20-2944028
Fiscal year end
May
Taxreturn type
Form 990
Year formed
2005
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G80: Specifically Named Diseases
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
Free account sign-up

Want updates when National Fabry Disease Foundation has new information, or want to find more organizations like National Fabry Disease Foundation?

Create free Cause IQ account