• 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

"The most absurd and reckless aspirations have sometimes led to extraordinary success. " -Marquis De Vauvenargues

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 face book. Each time, we had good discusions and community input but we never brought the discussions to a decision. This was not because it was contentious. Is was just because we needed a conversation among the North American Fabry support organizations with input from our community to find a color and ribbon that would work for everyone.

Well, we finally did it. Hooray! Our official color is a dark blue in the spirit of a denim blue color, the color used by some other organization for rare diseases. On the PMS color chart it is PMS 541.

The New Fabry Disease Ribbon

The font and colors in the helix may vary somewhat among different organizations or individual uses but it should maintain its basic identity. For instance, the Canadian Fabry Association (CFA) said they will probably change the helix colors to their organization's color themes.
 
We would especially like to thank the following individuals for their roles in making this happen:
 
Mercedes Schrank for her MOTIVATION. She nudged us to get the ribbon done for an upcoming April Fabry Awareness Walk. 
 
Florenda Baldwin for her INSPIRATION. She worked with the Fabry community to design a ribbon with a helix that many people really liked in a face book poll.
 
Kellie Johnson for her DEDICATION (hard work and perseverance) for her efforts to make a ribbon design with the words Fabry disease and the helix and for providing the final art that anyone can use.
 
Linda Keyes for her CONSULTATION. Linda kept us straight on the helix image.
 
Jack Johnson (FSIG) and Gina Bucci-Costantino (CFA) for CONSULTATION and COOPERATION. Our three support organizations worked together.
 
Jerry Walter (NFDF) for his COORDINATION in helping to bring all the moving parts together.
 
Thank you to many of our international Fabry community members for their input and PARTCIPATION.
 
The art vector files used to make the ribbons and other products with the ribbon design are available to anyone through one of the organizations FSIG, CFA, NFDF, and others. 
 
By Jerry Walter, NFDF Founder and President

For information about awareness materials, please see the Fabry Disease Awareness Materials tab in the drop down menu under the homepage's top menu bar titled Programs and Projects.

What can you do to help increase awareness? It takes a village!

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

    Read More
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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

    Read More
  • 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

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

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  • Family Assistance Program

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Featured Resources

Faces of Fabry