... held the 6th annual Charles Kleinschmidt Fabry Family Weekend Camp In September, 2015 at Victory Junction, NC? To date 87 families from 30 states and Canada have attended camp. Families usually get to attend for 2 or 3 times before having to take a break so we have provided a total of 187 camp expeiences to our families. Camp is provided expense free including air travel, lodging, meals and local transportation by the National Fabry Disease Foundation and its sponsors. Take a look at Victory Junction at www.victoryjunction.org. Victory Junction Camp is not a rustic camp. It has awesome facilities with a race car theme. If you are an eligible family interested in attending camp contact Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it.

... the National Fabry Disease Foundation held the 5th annual national Fabry Family Conference in September 2015. The conference is the largest gathering of people with Fabry disease anywhere in the world. The conference is held in Greensboro, NC on Thursday and Friday just before our weekend camp. Any families may attend the conference not just families attending camp. We always have a great line up of physician, industry and other speakers. Lodging and meals are provided. Air travel is provided to those who need it within our budget allowance. If you are interested in attending the conference contact Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it..

... 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. 

... posts Remembrances in the Remembering Family and Friends section of our website to honor and remember those who have passed away from Fabry disease. To include your family memebrs, please provide the information below to Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it.. We would like their name, dates of birth and death, a photo, and if possible their obituary or something written about them.  

... post information on our website's "Why Is Early Diagnosis So Important" section as an awareness initiative to help people to better understand the seriousness of our disease. If you have Fabry disease and have had one or more of these major medical events such a congestive heart failure, a heart attack, a pacemaker/defibrillator implanted, kidney failure/dialysis, kidney transplant, transient ischemic attack (TIA) or stroke, hearing loss to warrant hearing aids or cochlear implants, etc., please send a photo of you and your age at the time of each medical event to This email address is being protected from spambots. You need JavaScript enabled to view it.. We will only publish first names on the website and in our awareness publications.

... 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.

Jerry Walter

Jerry Walter

Founder and President

National Fabry Disease Foundation

Colonel, U.S. Army (Retired)

 

We Need Your Help

As a IRS 501(c)(3) non-profit support organization we rely on donations from organizations and individuals to provide meaningful support and assistance programs to people/families with Fabry disease. Please give generously!  

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Thank you to our corporate and foundation sponsors as well as our many individual donors. Contributions of all sizes add up to make a tremendous difference.

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