FSHD Navigator

We'll help you find the resources you need, no matter where you are on your journey with FSHD.

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:

By connecting you with multiple clinical trials and other research opportunities;
By matching you with a local FSHD patient group near you, or a virtual group that shares your interests;
By finding information and resources to help you live a better life with FSHD.

Please note: the FSHD Navigators are not able to give medical or legal advice or mental health counseling, but we can help you find credentialed professionals! We are a network of caring peers who are here to support your FSHD journey.

"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." - Gregg L.

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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.