Join the Fabry Legion, the Fabry Community's Army fighting against Fabry disease.
Join the fight against Fabry disease by registering on the National Fabry Disease Foundation website and by taking our surveys as they are distributed. The NFDF survey program called the Patient Reported Outcomes Survey (PROS) program where we learn from the PROS (individauls with Fabry disease) helps us to learn more about our disease and about our community, and helps to develop a community voice based on patient and family member feedback. Together, we have a stronger voice to cause and support positive change for individuals with Fabry disease and our families.
Increasing the number of people we can reach to support critical initiatives is very important. The stronger our voice, the better we are able to make a difference. We rely on our community to support initiatives such as:
- Advocating for approval of new treatment options
- Supporting important legislative and government policy initiatives for positive change
- Gaining Fabry disease awareness through Governor's proclamations for Fabry Disease Awareness Month
- Gaining support for programs and projects that benefit our community
- Highlighting the seriousness of our disease through our "medical events awareness" and "Remembering our family and friends" programs
We never share personal information unless we have permission for a specific purpose.
Additionally, stay connected to the NFDF and the Fabry disease community by doing these things: