We want everyone to be aware of Fabry disease!
Join us in spreading awareness about our rare, underdiagnosed, yet treatable disease. A better understanding can lead to better and longer lives for people with Fabry disease.
During April, we raise awareness for Fabry disease by educating patients and family members, caregivers, healthcare professionals and the greater community to improve the recognition, diagnosis, understanding, and management of Fabry disease.
Fabry Disease Awareness Month was established in April 2012. The Fabry International Network (FIN), the U.S. National Fabry Disease Foundation (NFDF), the U.S. Fabry Support & Information Group (FSIG), Fabry Australia, UK MPS Society (includes Fabry) and perhaps other Fabry disease advocacy groups and communities formally recognize April as our month to provide increased awareness about Fabry disease.
Each year, we work with Fabry community members in each state to obtain as many official state governors’ proclamations as possible. This program was interrupted by the pandemic in 2020 and 2021. In 2022, we resumed the program to recognize Fabry disease awareness in April in every state. Every state does not have an official proclamation program, and some states will only grant a week or a day. You can see photos of governors' proclamations and a map of our progress each year at www.facebook.com/FabryDisease.
During Fabry Disease Awareness Month, the NFDF distributes frequent news and information about Fabry disease via our e-newsletter and social media channels. See our social media channel links at the bottom half of our Link Tree. You can subscribe to our e-newsletter using this e-newsletter subscription link.
What can you do to help increase awareness? It takes a village!