Have you seen The Fabry Community Landscape handout?
The Fabry Community Landscape handout written by Jerry Walter is intended to provide 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?