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 a copy of the handout select this link:  The Fabry Disease Community Landscape June 2016

It can take many years to discover the many resources available to individuals and famlies and to learn about all the sources of information available. Sometimes the history is a mystery also. Jerry provides one person's perspective on a veriety of topics.

Topics addressed so far: (comments and suggestions are welcome)

 Introduction and the name Fabry disease

 Awareness information … Commonly asked questions

 Primary Fabry support organizations

 Where to find information

 The virtual community (face book)

 Fabry disease inheritance

 How many people have Fabry disease?

 The Fabry population (one possible scenario)

 Emergency information ... What should you have with you?

 More about the National Fabry Disease Foundation (NFDF)

 How does the NFDF contribute to research?

More to come

 Fabry disease testing

 Explanation of Fabry mutations

 Which physicians treat Fabry disease?

 Other topics?

Please provide feedback and suggestions on the booklet after you have had a chance to use it so we can make improvements in the next version. send input to This email address is being protected from spambots. You need JavaScript enabled to view it. or phone 800-651-9131.


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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.

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