Our look is new. Our purpose is the same. Learn more about our brand evolution.
Do you have a question, but you’re not sure who to ask? Looking to find someone else in similar circumstances? Are you seeking a particular resource: a clinician familiar with FSHD; a rundown of the available assistive technology; an introduction to clinical trials; or anything else? Ask the FSHD Navigators and get connected with a real person! We are here to journey alongside you and give you the resources you need to live your best life with FSHD. Just email us at Navigator@FSHDsociety.org or call
781-301-6060 x4000.
The FSHD Navigator helps patients everywhere in numerous ways:
“The FSHD Navigator is dedicated to helping families find what they need to live their best lives with FSHD.” – Anna Gilmore, Head of the FSHD Navigator Program
“There is nothing more beneficial to living your best life, than to have access to the knowledge of others that have walked the same path. The FSHD Society’s Navigator program will give us all important information, support and guidance for the many challenges we face. I’m very excited about it.
”
The question we get asked most frequently is, “Do you know a doctor in my area who knows about FSHD?” We can’t give recommendations for one doctor over another, and we can’t guarantee just how knowledgeable any one doctor is. But, we do know who has seen other FSHD patients – and that’s a good start! Use our new, searchable map tool to help curate your healthcare team.
No one should face FSHD alone. Find your place in the greater FSHD Community through our Chapter Program, Gathering Place meetings, FSHD University webinars, and in-person events.
Get Connected
BetterLife FSHD is a health and research platform created to help people living with Facioscapulohumeral Muscular Dystrophy (FSHD). BetterLife gives you tools to track your symptoms and resources to better understand and manage your FSHD.
Learn More About BetterLife
Genetic testing is often the first step in becoming ready for clinical trial participation. It can also be an important step in understanding or gaining an official diagnosis.
Learn More About Genetic Testing
A clinical trial is a type of research study which tests the effectiveness of treatments with human volunteers. There are a number of current trials and additional studies available for participation.
Learn More About Studies, Trials, and Participation
