Our look is new. Our purpose is the same. Learn more about our brand evolution.
Our look is new. Our purpose is the same. Learn more about our brand evolution.
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If you’re on the tool, and you notice some outdated information (or your own doctor is missing!), please take a moment to submit updates.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.
