We want everyone to be aware of Fabry disease!
Join us in spreading awareness about our rare disease. Education and awareness are critical to increase the recognition, diagnosis, understanding and management of Fabry disease. Fabry disease remains a severely underdiagnosed, misdiagnosed, and often misunderstood condition.
The Fabry disease community celebrates Fabry Disease Awareness Month in the U.S. and in a few other countries in April each year. In the U.S. the National Fabry Disease Foundation and the Fabry Support & Information group (FSIG) work with Fabry community members in each state to obtain as many official state governors’ proclamations as possible. We recognize Fabry disease awareness in April in every state but not every state has an official program or some states will only grant a week or a day. Each year you can see photos of governor's proclamations and a map of our progress at www.facebook.com/FabryDisease.
In 2016, to celebrate, we took the opportunity to unveil several new resources including the new version of our website, our new "My Health Handbook and Emergency Information" booklet, our new "The Fabry Community Landscape" handout, an updated NFDF Program Handout, the Fabry community's new awareness ribbon, and more. The handouts are located in the Featured Resources section of the website.
In 2017, we are celebrating Fabry Disease Awareness Month by attempting to make a face book post and a twitter tweet at least once a day throughout the month. We hope to update everyone on important Fabry disease and Fabry disease community information.
Please also see the tab at the top of our website "Programs and Projects", then "Fabry Disease Awareness Materials".