• 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.

    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

"Life becomes harder for us when we live for others, but it also becomes richer and happier." -Albert Schweitzer

Fabry Disease Community Announcements

  • 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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  • "My Health Handbook and Emergency Information" Booklet

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

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

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  • The Fabry Community Landscape Handout

    Have you seen The Fabry Community Landscape handout?

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

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  • 1
  • 2

Why Early Diagnosis is So Important!

Adam
Keith
Glen
Mandy
Lisa
Becky
Jerry
Cheryl
Mike
Edward
Wes
Tammy
Simon
Crystal
Nathan
Marc
Juan
Cheryl
Bob
Chris

Adam

Pacemaker: Age 32
Pacemaker/Defibrillator: Age 34

Keith

Kidney Failure/Dialysis: Age 52
Transplant: Age 54

Glen

Kidney Failure/Dialysis: Age 33
Transplant: Age 34

Mandy

Several Transient Ischemic Attacks in 30s
Strokes: Ages 38 and 40

Lisa

Heart Attack: Age 38
Stroke: Age 40

Becky

Open Heart Surgery: Age 44
Pacemaker/Defibrillator Implanted: Age 44

Jerry

Severe hearing loss/hearing aids: age 50
Heart Attack: Age 52
Pacemaker/Defibrillator Implanted: Age 52

Cheryl

Pacemaker (1st of 4): Age 42
Congestive heart failure diagnosed: Age 47
Chronic kidney disease diagnosed: Age 53
TIA: age 54
Defibrillator: Age 55

Mike

Kidney failure/dialysis: Age 45
Kidney transplant: Age 48
Stroke: Age 48

Edward

Kidney failure/dialysis: Age 37 Kidney Transplant: Age 39

Wes

Kidney Failure/Dialysis: Age 38 Kidney Transplant: Age 43 Two Transient Ischemic Attacks: Age 46

Tammy

Kidney failure/dialysis: Age 31
Lost her battle: Age 42

Simon

Kidney Failure/Dialysis: Age 47
Hearing Loss/Cochlear Implants:
Ages 47 and 48

Crystal

Kidney failure/dialysis: Age 37
Awaiting transplant

Nathan

Kidney Failure/ Dialysis: Age 18 Kidney Transplant: Age 19

Marc

Kidney transplant: Age 41

Juan

Kidney dialysis then transplant: Age 30
Kidneys failed, new transplant failed, dialysis restarted: Age 39
Pacemaker/defibrillator implanted: Age 39

Cheryl

Multiple transient ischemic attacks (TIAs)
Age: 30s to 50s.

Bob

Kidney failure/dialysis: Age 52
Kidney transplant: Age 52
Open heart surgery: Age 52
Brain Aneurysm: Age 55
Severe hearing loss: Age 50

Chris

Kidney Failure/Dialysis: Age 38
Lost his battle: Age 41

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. Please partcipate!

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. Thank you everyone!

Supporters

Two Support Organizations

fsig

The Fabry community is fortunate to have two complimentary support organizations providing a diverse set of programs and services. Please join the Fabry Support & Information group (FSIG).

Learn More

Featured Programs

  • Fabry Disease
    Symptoms

  • Victory
    Junction

  • Family Assistance Program

  • Our YouTube
    Channel

  • Tell Your Story -
    Sharing Is Caring

  • Fabry Disease Publications

  • Find A Doctor
    Database

  • Remembering
    Family & Friends

Featured Resources

Faces of Fabry