• 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

    Read More

  • 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.

    Read More
  • 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

    Read More

  • 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 work an unknown good man has done is like a vein of water flowing hidden underground, secretly making the ground green." -Thomas Carlyle

Greetings everyone! 

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

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

    Read More
  • "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

    Read More
  • 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

     

    Read More
  • Becky

    Becky

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

     

    Read More
  • Mandy

    Mandy

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

     

    Read More
  • 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

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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