The last 10 years went by quickly! In June 2015 the National Fabry Disease Foundation celebrated its 10 year anniversary. We are very proud of what we have accomplished but still have a long, arduous journey ahead of us. There is still so much to be accomplished.
The most important lesson we have learned is that our programs and services are not meaningful unless people with Fabry disease and their families, our primary stakeholders, help us to get them right. We knew this in the beginning but it has been reinforced now through 10 years of experience. We can’t represent and work on behalf of the Fabry community unless you tell us what’s important.
This year we are holding our 7th annual Charles Kleinschmidt Fabry Family Camp and our 6th annual Fabry family educational conference. We have provided a free, confidential, 24/7 family assistance program (counseling and referrals) for more than 5 years. We have provided many educational resources to improve the understanding of Fabry disease and to improve recognition and diagnosis of Fabry disease to ensure everyone has a chance to live better and longer lives. We have many other programs ready, awaiting resources to implement them.
We provided several new resources this year including: an updated NFDF Programs Handout, a document called The Fabry Disease Community Landscape, and a terrific resource, a "My Health Handbook and Emergency Information" booklet, and more. See the Featured Reources scetion of the home page.
In 2014 we implemented a monthly survey program to learn from our community. It was a very successful program. We are using the information gathered to improve the understanding of Fabry disease, to shape current and future programs, to and to inform future research. We will refine and continue the survey program this year in 2016.
We urge all adults with Fabry disease to participate in future surveys. With greater participation the results are more representative of the entire Fabry community and much more useful. Especially now, there are important issues being discussed in the medical community that may not have the best outcome without our community voice being heard. You are helping many others by participating.
We thank our family members, friends, physicians, researchers and supporters as well for your tremendous participation and support. With greater awareness of Fabry disease, increased recognition and diagnoses, and newborn screening programs emerging we have much work ahead of us.
We look forward to working with you all every step of the way!
Proudly serving the Fabry community and always available to speak with you at 800-651-9131.
Sincerely, Jerry Walter
NFDF Founder and President