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 information an emergency care professional should know about Fabry disease? What should they know about you?

To develop this handbook, we started with a one-sheet document we prepared for our new Fabry Community Landscape handout about what physicians should know in the event of an emergency. We asked a variety of physicians with Fabry experience to comment on that document and incorporated their comments. Then we modeled much of the rest of the handbook after a book written by Dr. Michael F. Roizien and Dr. Mehmet C. Oz with The Joint Commission called “You – The Smart Patient”. Their book was very helpful in constructing our booklet to give people with Fabry disease a resource they can keep with them for emergencies and to track their medical information.

We hope the booklet is a useful tool for our community!

To receive a booklet, register on our updated website as soon as possible at www.fabrydisease.org. If you registered in the past but it was before July 2016, please re-register. Select the Register/Login link at the top of the homepage at www.fabrydisease.org.  Then select "Don't have an account" and complete the registration form. We'll send the booklet and other resources in the order the new website registrations are received. We'll confirm your contact information with you before mailing anything to ensure we don't waste our limited resources mailing to incorrect or outdated addresses.

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.

My Health Handbook Introduction

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!  

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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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