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
Personnel at National Fabry Disease Foundation
Name | Title | Compensation | Date of data |
---|
Gerald Walter | Board Chair | $109,200 | 2023-10-13 |
Casey McKenna | Senior Program Manager | | 2024-11-24 |
Tracy Myatt | Secretary | $0 | 2024-11-24 |
Melanie Wilson | Treasurer | $0 | 2024-11-24 |
Derek Halberg | Vice Chair | $0 | 2024-11-24 |
Financials for National Fabry Disease Foundation
Revenues | FYE 05/2023 | FYE 05/2022 | % Change |
---|
Total grants, contributions, etc. | $307,957 | $572,188 | -46.2% |
Program services | $0 | $0 | - |
Investment income and dividends | $0 | $0 | - |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $0 | $0 | - |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $307,957 | $572,188 | -46.2% |
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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
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/Â
- 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
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