Find resources near you
by Anna Gilmore, FSHD Society
Among the most frustrating interactions you can have with a new healthcare provider is realizing that they don’t know anything about your condition. For a long time, the FSHD community has asked for some kind of database of providers who have any level of FSHD knowledge. This year, we are finally rolling out a new tool to help fill this need: The Care Connector!
This tool has been built as a searchable map, where you can set your search area and select what types of providers/resources you’d like to see. The information that pops up on the map comes from a variety of sources and will need to be updated regularly.
If you’re on the tool, and you notice some outdated information (or your own doctor is missing!), please take a moment to submit updates. We want to share the most accurate information to help families find the resources and support they need.
Many thanks to Ranae Beeker, Len Goldberg, Lois Gilman, Tara Hill, and other contributors who have worked over the years to bring this project to fruition. We wouldn’t have made it to this point without you.
The searchable map is not working.
I need an FSH doctor in Massachusetts who accepts Tufts Medicare Advantage health insurance. My husband is a 69-year-old with FSH since he was 17 years old. He hasn’t seen a FSH specialist since his early twenties. He really need to be seen.