• 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

"Courage isn't always a lion's roar. It is sometimes the heart at the end of the day saying, I will try again tomorrow." -Author Unknown

Greetings! The National Fabry Disease Foundation (NFDF) welcomes and encourages people around the world to sign-up (create an account) on the NFDF website and to make use of our programs to the greatest extent possible. We have many programs that may be useful to our international community and we will strive to create more!

We view the Fabry disease community as individuals with Fabry disease and family members as well as our friends, physicians and clinical staff, researchers, care providers, and supporters. Participation, input, feedback and collaboration across all sectors of our community are important to enable people with Fabry disease to live better and longer lives.

First, we believe it is extremely important for people with Fabry disease and individuals in the broader Fabry disease community around the world to support your respective national and regional patient/ family support groups and to also support the activities of the Fabry International Network (FIN). Many Fabry support organizations/organisations around the world offer valuable education, information, assistance and support programs to benefit their respective Fabry disease communities.

Conversely, each national and regional organization/organisation needs your participation and support to better understand your national and regional needs, to enable development of the best support programs possible tailored to your community, and to become a strong voice for positive change where you live.

We also believe it is important to make use of all the various resources available worldwide to improve your understanding of Fabry disease, to benefit from every resource or program possible, and to improve your chance to live better and longer lives.

As such, the National Fabry Disease Foundation welcomes and encourages people around the world to sign-up on our website and visit us frequently, subscribe to our newsletter, “Like” our face book page, subscribe to our YouTube channel and Inspire discussion page, follow us on Twitter, and make use of our education, awareness and assistance resources. We hope to make as many of our resources useful to the global Fabry community as possible.

Wherever you live, please use National Fabry Disease Foundation education, information, awareness and support resources as they become available. A few of our programs warrant special mention.

We believe our 15 minute YouTube symptoms video is a great tool...
to gain a better understanding of Fabry disease and to educate family members, friends, supporters, and healthcare professionals who are not familiar with Fabry disease. Please see our YouTube channel link on the home page.
We provide free access to selected medical publications...
from the medical publications section of our homepage. To access publications you must sign-up on the website according to our agreement with the publication providers to limit access to our community only rather than the general public. Anyone in the global Fabry community can sign-up (create an account) on our website.
Please subscribe to our newsletter...
in the “Connect with us” section of the homepage in the right-hand column. Every article of the newsletter may not apply to the international community but many articles will.
We encourage participation in...
our Faces of Fabry program, our medical events awareness program, and our remembrance program. Telling our story of serious medical events (kidney failure, dialysis, transplants, transient ischemic attacks and stroke, heart attacks, pacemaker/defibrillator implants, severe hearing loss/hearing aids/cochlear implants, etc) and premature loss of life at a relatively young age, as well as honoring and remembering people in our community is important regardless of where we reside around the world. These programs are essential components of Fabry disease awareness.

Please send photos and information to Jerry at This email address is being protected from spambots. You need JavaScript enabled to view it..

The United States has two Fabry disease community support organizations. In addition to participating in National Fabry Disease Foundation programs, we encourage everyone to also participate in Fabry Support and Information Group (FSIG) programs to benefit from their many contributions to support individuals and families living with Fabry disease.

In summary:

Please join your local, regional or national support organizations. They need your support, your input, your feedback, and they need you to help strengthen your community voice in your country to deal with the important issues you face. Also, make use of the valuable resources from other support groups, clinics, industry, and other sources of Fabry disease information and assistance.

... and please participate in NFDF programs that may help you on your journey with Fabry disease as patients, family members, care providers, and supporters. Thank you! 

 

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
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
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
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