• 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

    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

"Learn from yesterday, live for today, hope for tomorrow." -Albert Einstein

Welcome to our website affectionately referred to as our Mothership, the hub of our education and information programs! We hope you enjoy reading about what is happening in the Fabry disease community and are able to participate in our many information sharing programs. Our website was designed to provide you with more opportunities to receive and to share valuable information and resources within the Fabry disease community.

In addition to telling you about what’s happening in the Fabry community from our perspective and providing Fabry disease resources, we have added website features to give each sector (individuals with Fabry disease, family members, friends, physicians, researchers, clinic staff, and others in our community an opportunity to share information and announcements.

New and improved website features include:

  • A community announcements section where we will post announcements from all sectors of the Fabry disease community as you provide them. Please tell us about important individual/family and organization news, events, programs, and studies you would like to share with the community.
  • Easier access to our social networking sites and newsletter sign-up in the “Connect With Us” section in the right column of the website. We would like everyone to re-subscribe to our newsletter using the new form as we improve our services. Please subscribe again even if you are already subscribed so you don’t miss future newsletters.
  • An improved calendar display to announce meetings and events around the country. We would like to post all Fabry related meetings and events to ensure everyone has an opportunity to attend. Please send save-the-date announcements and meeting invitations as far in advance as possible.
  • A section for people with Fabry disease and our family members to tell the stories of our journeys with Fabry disease.
  • A section called “Why is early diagnosis of Fabry disease so important?” We need to highlight the seriousness of our disease to get the attention and support we need to cause positive change for individuals with Fabry disease and our families. Please send us photos and information to This email address is being protected from spambots. You need JavaScript enabled to view it. about the age you suffered from serious medical events such as kidney failure, dialysis, transplants, transient ischemic attacks and strokes, heart attacks, pacemaker/defibrillator implants, severe hearing loss/hearing aids/cochlear implants, etc.
  • A section of the website called “Remembering Family and Friends” where we can honor and remember people who have passed away from Fabry disease often at a relatively young age. Please provide the name and dates of birth and death of family members and friends who have passed away directly or indirectly from Fabry disease. If you are able to send a photo and a tribute or obituary that would be nice also but not required. At our September camp and conference we will hold an event to honor and remember those who have passed away. The event will include reading the names of each family member or friend we are honoring. Please participate by submitting names!
  • Other special sections of the home page for major programs such as our annual Charles Kleinschmidt Fabry Family Weekend Camp, our Family Assistance Program, and others. Our annual conference and camp is usually held on September.
  • Print and email links on every website page plus an integrated comment feature so you can easily make comments about website content when you are logged-in. Please share website information and programs widely and provide feedback to help us improve our programs and services.

Some sections of the website such as the main articles at the top of the home page, and the articles in the "What's Happening in the Fabry Community" and "Why Early Diagnosis of Fabry Disease is so Important" sections have left and right scroll buttons to view all of the available articles.

Many features of the site are still being updated such as the find a doctor database, the Fabry population map, the Frequently Asked Questions, and many other website content areas. We’ll keep you posted through our various news channels such as our website announcements, and face book and Twitter posts as we make more progress on these items.

We will also continue to develop new programs and services, to share information, and to facilitate community interaction that strengthens our community and increases our ability to help people with Fabry disease and our families. We’re better together!

 

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

     

    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.

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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