• Welcome to Our Mothership!
    Welcome to Our Mothership!

    Our website remains at the center of our education and outreach programs.

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  • The International Fabry Community
    The International Fabry Community

    Our fight with Fabry Disease does not have geographic boundaries

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  • Did You Know?
    Did You Know?

    The NFDF provides many Fabry community programs?

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  • Patient Reported Outcomes (Pros) Program
    Patient Reported Outcomes (Pros) Program

    We are learning from the PROs … individuals with Fabry disease!

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  • Recognize and Rescue Everyone
    Recognize and Rescue Everyone

    Please participate in our Fabry disease education and awareness initiatives.

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  • Fabry Family Weekend Camp
    Fabry Family Weekend Camp

    … is in September at Victory Junction, Randleman, NC

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  • In Their Honor
    In Their Honor

    Strength, courage, contribution and hope

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  • Welcome to Our Mothership!
  • The International Fabry Community
  • Did You Know?
  • Patient Reported Outcomes (Pros) Program
  • Recognize and Rescue Everyone
  • Fabry Family Weekend Camp
  • In Their Honor

"The best way to find yourself is to lose yourself in the service of others." -Mahatma Gandhi

... 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)

 

Fabry Disease Community Announcements

  • The Fabry Community Landscape Handout

    Have you seen The Fabry Community Landscape handout? 

    The Fabry Community Landscape handout written by Jerry Walter provides information that may be helpful to make your journey with Fabry disease easier. 

    To view or print

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  • "My Health Handbook and Emergency Information" Booklet

    We have a great new resource for individuals with Fabry disease!

    We have had many questions and disscussions about what people with Fabry disease should have with them in an emergency. What is the essential

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  • Hooray! We have a color and a ribbon.

    Our official awareness color & ribbon have been a long time coming!

    Over several years various small groups of the Fabry community had many discussions about an official color and an awareness ribbon, mostly on

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Why Early Diagnosis is so Important?

  • Jerry

    Jerry

    • Severe hearing loss/hearing aids: Age 50
    • Heart attack: Age 52
    • Pacemaker/defibrillator implanted: Age 52

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  • Lisa

    Lisa

    • Heart attack: Age 38
    • Stroke: Age 40

     

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  • Becky

    Becky

    • Open heart surgery: Age 44
    • Pacemaker/defibrillator implanted: Age 44

     

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  • Mandy

    Mandy

    • Several transient ischemic attacks in 30s
    • Strokes: Ages 38 and 40

     

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  • Glen

    Glen

    • Kidney failure/dialysis: Age 33
    • Transplant: Age 34

    Read More
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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!  

DonateNow

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.

Connect With Us

Do You Have Questions?

Visit our Frequently Asked Questions page to read about common questions related to Fabry disease.

Frequently Asked Questions

Contact Us

Founder's [br]Corner

We continue to make great progress on finding new ways and improving current ways to support our community. We hope our efforts contribute to making your lives better! Founder and President, Jerry Walter

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Join the Fight [br]We need You!

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. 

Join Us

Our [br]Supporters

our supporters

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. 

Supporters

Two Support Organizations

fsig

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.

Learn More

Featured Programs

  • Fabry Disease
    Symptoms

  • Victory
    Junction

  • Family Assistance Program

  • Our YouTube
    Channel

  • Document
    Archives

  • Fabry Disease Publications

  • Find A Doctor
    Database

  • Remembering
    Family & Friends

Featured Resources

Faces of Fabry