"Life is no brief candle to me. It is sort of a splendid torch which I have got hold of for a moment, and I want to make it burn as brightly as possible before handing it on to future generations." -George Bernard Shaw
The Fabry Community Landscape handout written by Jerry Walter is intended to provide information that may be helpful to make your journey with Fabry disease easier.
To… Read More
We have had many questions and disscussions about what people with Fabry disease should have with them in an emergency. What is the essential… Read More
Over several years various small groups of the Fabry community had many discussions about an official color and an awareness ribbon, mostly on… Read More
Join the fight against Fabry disease! Make your voice count to create positive change for people with Fabry disease and our families. One important way to help is to take our surveys for everyone's benefit.
We are very grateful for the generous contributions of our corporate, organization, business and individual donors who all make our programs possible. Every size donation matters.
The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Join the Fabry Support & Information Group also.
There are many common Fabry disease symptoms that could lead to diagnosis and many symptoms to manage. They vary greatly among individuals.
Each September we hold the annual Charles Kleinschmidt Fabry Family Weekend Camp. Families with a 6-16 year child with Fabry disease may attend.
Individuals with Fabry disease and family members are invited to use our free, confidential, 24/7 Family Assistance Program. Counselors are there now.
The NFDF produces educational videos about a variety of topics related to Fabry disease. Please see our current videos and stay tuned for more!
Telling our stories may really help someone else to understand and cope with Fabry disease. We have very common symptoms but many different experiences.
The NFDF obtains licenses to various peer-reviewed medical publications about Fabry disease to provide free online access to our members.
Please take a moment to remember family and friends who have passed away from Fabry disease. We keep them in our thoughts and prayers!