Do you know? The NFDF ...
... 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 to help strengthen our voice and our ability to make a difference!
... provides a free periodic e-newsletter to people who subscribe from the link on our homepage. We currently have over 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 two YouTube videos about symptoms and inheritance. Together, the two nearly identical versions of the symptoms video have been viewed almost 1,400 times in four months. Please share our videos and subscribe to our YouTube channel at www.YouTube.com/TheNFDF. We are working on several other educational videos.
... published a 2012 Fabry disease educational calendar that is great to help families, friends and healthcare providers understand our disease. Please order a calendar. Donations for calendars support NFDF support and assistance programs! Please order a calendar from the Make a Donation link at the upper right corner of our home page.
... is working with members to obtain Governor proclamations in as many states as possible to proclaim April 2012 as Fabry Disease Awareness Month. Please subscribe to our e-newsletter to hear about celebrations and awareness events. Plan your own special event.
... hosts a Fabry community face book page with over 700 followers from more than 20 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? See details on our home page.
... needs your help! Please share information about the National Fabry Disease Foundation. All families with Fabry disease should have an opportunity to benefit from National Fabry Disease Foundation support and assistance programs.
... believes we can accomplish so much more working together as a community! Please participate in National Fabry Disease Foundation programs, 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)