• 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

"If there is no struggle, there is no progress." -Frederick Douglass

National Fabry Disease Foundation "Take Our Surveys" Contest

If you are 18 years or older and have the Fabry disease gene, whether you have symptoms or not, you can be a great help in our efforts to better understand Fabry disease and the Fabry disease community. So many of you tell us you would like to help because you took years to get diagnosed, or because you have had major medical events that may have been prevented, or because you have lost loved ones at an early age, or for many other good reasons. This program is one of the many ways you can help others and make a difference.

Please help us to gather information to continue learning about Fabry disease and the Fabry community to support development of Fabry disease education and community support programs.

We will distribute a monthly survey for you to complete through our electronic newsletter service. If you complete the survey in the month it is issued, you'll be eligible to win up to $250.00 in the monthly prize drawing. The monthly prize amount is based on the number of survey participants for each month by awarding $1.00 (one U.S. dollar) for every survey completed.

A separate monthly prize of up to $250.00 will be awarded to the U.S. Fabry disease community and to the global (non-U.S.) Fabry community.

At the end of the year we will have a separate U.S. and global year-end drawing for $500.00 each for everyone who has completed all 12 monthly surveys. If you miss taking a monthly survey in the month it was distributed, you will still be eligible for the year-end drawing if you complete it after the month it was originally distributed as long as all surveys are completed by January 1st, 2015.

Our primary goal is to learn and share useful information but we are using a contest format to increase participation and to add a little excitement to this very important initiative. We still have much to learn about Fabry disease. The monthly survey results we be shared with you and the greater Fabry community. We hope to have a very large number of participants (hundreds) so the results will be a good representation of the overall Fabry community and will be more useful to us all.

Please take the monthly surveys and please share the newsletters and survey links with your family members who have the Fabry gene. We will not share your personal information except your first name only and location such as state, province or county, and country.

Along with completing the surveys, you must subscribe to our monthly newsletter to participate. Your subscription enables us to contact you to verify your status as someone with the Fabry gene if necessary, to clarify your survey answers if necessary, to contact you if you win the prize drawing, and to distribute the monthly survey links to you. The National Fabry Disease Foundation uses the newsletter service subscription list to store all of our contact information to avoid maintaining multiple contact lists with our small staff.

If you cannot accept the prize because of income limitations because you receive social security disability payments or for any other reason, please still take the survey to improve the information collected; just let us know you cannot accept the prize. 

If you have any questions or comments, or need assistance please contact Jerry at www.fabrydisease.org or 800-651-9131 (U.S.  non-toll-free) or 919-932-7785 (non toll-free number).

Thank you for your support and good luck!

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


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

    Read More
  • Lisa


    • Heart attack: Age 38
    • Stroke: Age 40


    Read More
  • Becky


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


    Read More
  • Mandy


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


    Read More
  • 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!  


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. 


Two Support Organizations


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

  • Victory

  • Family Assistance Program

  • Our YouTube

  • Document

  • Fabry Disease Publications

  • Find A Doctor

  • Remembering
    Family & Friends

Featured Resources

Faces of Fabry