2025 Fabry Family Education Conference
204 Centreport Dr
Greensboro
NC
United States
Advocacy Partner: National Fabry Disease Foundation
About the National Fabry Disease Foundation
The National Fabry Disease Foundation (NFDF) is an organization dedicated to supporting the Fabry disease community. Our five primary functions are assisting with Fabry disease education, facilitating Fabry disease identification to improve Fabry disease recognition and diagnosis, providing various forms of assistance to individuals with Fabry disease, supporting Fabry disease research, and promoting advocacy for Fabry disease issues.
The NFDF is a non-profit public charity organization under section 501 (c) (3) of the Internal Revenue Service Code.
The NFDF works to increase the level of effort devoted to assisting and supporting people with Fabry disease. While increased effort is required in each of the NFDF’s five primary functions, Fabry disease education and identification are our two highest priorities. It is critically important to educate healthcare providers, families, and others to recognize this progressive, destructive, and often life-threatening disease earlier in the disease process.
Through improved Fabry disease education, family tree analyses, high-risk screening programs, and newborn screening programs, where approved, we must find thousands of individuals in the U.S. living with Fabry disease manifestations who are unaware they have Fabry disease. Once identified and diagnosed, individuals with Fabry disease can make informed disease management and treatment decisions.
With currently available Fabry disease management and treatment options and continued research to discover improved treatments for Fabry disease, many individuals with Fabry disease now have an opportunity to live significantly better and longer lives.
Contact: Jerry Walter – Founder and President
Phone: 919-732-2799 (desk) or 703-298-1935 (cell)
Email: [email protected]
Angiokeratomas - Check Your Bs for Fabry Disease
The National Fabry Disease Foundation (NFDF) is connected to hundreds of people who know they have Fabry disease (FD) and to others vested in helping people with Fabry disease live better and longer lives to provide them with various education and community support program information. Except for limited state newborn screening programs and limited high-risk screening studies in groups of people who have early strokes, kidney dialysis and transplants, and left ventricular hypertrophy at relatively early ages, it is difficult to reach beyond our known population to find people who have undiagnosed FD. Testing and treatment are available for those who recognize they may have Fabry disease.
As one attempt to increase recognition of FD, Jerry Walter, Founder and President of the National Fabry Disease Foundation, created a video about angiokeratoma, a common manifestation and the only visible sign of FD.
We encourage people to watch the video at the link below and share it with everyone they know. A diagnosis of FD could significantly improve and perhaps save a person’s life.
The National Fabry Disease Foundation’s 14th annual Fabry Family Education Conference and follow-on 13th annual Fabry Family Weekend Camp in October 2024 were a huge success!
The conference in Greensboro, NC, provides an excellent opportunity for people with Fabry and their families to learn from Fabry medical experts, support organization representatives, and pharmaceutical industry representatives. In addition to the staff, exhibitors, speakers, healthcare providers, organization attendees, contracted nannies and sitters, and family members, 112 adults and children with Fabry disease attended.
During our weekend camp at nearby Victory Junction in Randleman, NC, family members have opportunities to learn from each other, develop mutually supportive relationships, and have fun with our nearly 60 tremendous camp volunteers. This is where the magic happens!
See who attended at https://www.instagram.com/p/DDpnEGDP35f/ .
Upcoming events
About Advocacy Partners
The information above is provided by our partner. Learn more about our advocacy partners here.