National Fabry Disease Foundation
National Fabry Disease Foundation
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About this organization
Mission
ENSURE THAT ALL INDIVIDUALS WITH FABRY DISEASE ARE IDENTIFIED, DIAGNOSED AND TREATED IN TIME TO AVOID A DIMINISHED QUALITY OF LIFE AND LIFE THREATENING CONSEQUENCES. PROVIDE ASSISTANCE TO INDIVIDUALS AND THEIR FAMILIES WITH FABRY DISEASE. PROVIDE EDUCATION AND AWARENESS TO INCREASE DISEASE RECOGNITION AND DIAGNOSIS. PROMOTE RESEARCH TO IMPROVE TREATMENT AND FIND A CURE.
About
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; VARIOUS MATERIALS SUCH AS AN EDUCATIONAL FABRY SYMPTOMS PRESENTATION, HAND-OUT AND CALENDAR, A FABRY COMMUNITY LANDSCAPE DOCUMENT, FREQUENT (OFTEN DAILY) EDUCATIONAL POSTS ON OUR FACE BOOK PAGE OF OVER 2,000 FOLLOWERS, PERIODIC TWEETS ON OUR TWITTER PAGE, AND DAILY ASSISTANCE VIA EMAIL AND PHONE. WE ARE IN CONTACT WITH OVER 1,200 ADULTS WITH FABRY DISEASE BY EMAIL. OUR PATIENT-REPORTED-OUTCOMES SURVEY PROGRAM YIELDED 200 TO 400 HUNDRED PARTICIPANTS PER SURVEY. WE FACILITATED OBTAINING ABOUT 40 OF 50 STATE GOVERNOR'S PROCLAMATIONS FOR APRIL FABRY DISEASE AWARENESS MONTH; EVIDENCE INDICATES THAT 10-20 TIMES AS MANY PEOPLE HAVE FABRY DISEASE AS ARE CURRENTLY DIAGNOSED AND UNDERGOING TREATMENT.
Interesting data from their 2020 990 filing
The filing specifies the mission of the non-profit as “To ensure that all individuals with fabry disease are identified, diagnosed and provided an opportunity for treatment in time to avoid a diminished quality-of-life and life-threatening consequences; to provide education and awareness to people with fabry disease and their families, to physicians, and to the public; to provide support and assistance to people with fabry disease and their families; and to conduct and promote research to improve management and treatment for fabry disease.”.
When explaining its duties, they were described as: “To ensure that all individuals with fabry disease are identified, diagnosed and treated in time to avoid a diminished quality of life and life threatening consequences; to provide education and awareness; and to promote research to improve treatment for fabry disease.”.
- The state in which the non-profit is authorized to operate legally is VA.
- According to the filing, the address of the non-profit for the year 2020 is 318 FOX HILL FARM DRIVE, HILLSBOROUGH, NC, 27278.
- The non-profit has reported 2 employees on their form for the year 2020.
- Is not a private foundation.
- Expenses are between $250,000 and $500,000.
- Revenue is between $250,000 and $500,000.
- Revenue less expenses is -$39,700.
- The organization has 7 independent voting members.
- The organization was formed in 2005.
- The organization pays $134,679 in salary, compensation, and benefits to its employees.
- The organization pays $4,580 in fundraising expenses.
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