... provides a free, confidential family assistance program through KGA, Inc. The program includes 24/7 telephone counseling and other services for families with Fabry disease. Would you like to speak with someone? See the Family Assistance Program tab on our homepage for a list of services.
... provides free access to many Fabry related journal articles by licensing them for use by our members. We hope this service helps you to learn more about and better understand Fabry disease? See the medical publications tab on our home page. Register on our homepage to become a member.
... provides free membership and does not share member information without permission. Our members include people with Fabry disease, family members, friends , Fabry healthcare providers, and our supporters. Please become a member!
... provides a free periodic e-newsletter to people who subscribe from the link on our homepage. We currently have about 1300 subscribers. Have you and your family members subscribed? Sign up on our home page.
... is implementing several education programs. Because we have treatment available and the hope of additional treatment options soon, we have a R.A.R.E. opportunity to Recognize And Rescue Everyone with Fabry disease. Everyone should have the opportunity to be recognized, diagnosed and offered treatment to enable us to live better and longer lives.
... produced YouTube videos about symptoms and inheritance, and several awareness videos. Please share our videos and subscribe to our YouTube channel at www.YouTube.com/TheNFDF. We are working on other education and awareness videos.
... implements a Patient Reported Outcomes Survey (PROS) program to learn from the pros, individuals with Fabry disease. We learn many insights to determine future research needs, to provide questions for our doctors based on the experiences of others, and to learn about Fabry disease in areas of interest that have not reached the level of formal research and published medical articles.
... works with Fabry community members in each state along with the Fabry Support & Information Group (FSIG)to obtain Governor proclamations to proclaim April as Fabry Disease Awareness Month.
... hosts a Fabry community face book page with over 1,900 followers from almost 50 countries. Please "Like" our page at www.facebook.com/FabryDisease. We usually post news here first.
... provides free "Fighting Fabry Disease" wristbands. Are you wearing Fabry disease awareness wristbands to spread awareness and show support?
... needs your help! Please share information about the National Fabry Disease Foundation. All families with Fabry disease should have an opportunity to benefit from the National Fabry Disease Foundation's many programs and services.
... believes we can accomplish so much more working together as a community! Please participate in National Fabry Disease Foundation programs, take our surveys, answer our calls to action as they occur, share information with others, and let us know what you think is important as we do what we can to help people with Fabry disease live better and longer lives!
Thank you for your support to the Fabry community! Please contact me at anytime.
Founder and President
National Fabry Disease Foundation
Colonel, U.S. Army (Retired)