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[…] in family life, you will probably have many more questions than answers. Here are some FSHD-specific resources to get you started. A good primer is this conversation with genetic counselor […]
[…] management led her to roles overseeing clinical studies and supporting collaborative research efforts. After Justin’s FSHD diagnosis, Amanda sought out the FSHD Society and soon became a chapter leader for […]
[…] to serve as a source of information and support for all patients and families with FSHD; to act as a driving force in the development of research directed towards treatment […]
[…] injections. Do you know of any studies/reports about this type of treatment for someone with FSHD (or related conditions)? Here’s the link to their website: http://www.bowlermedical.org/. The physician […]
by June Kinoshita, FSHD Society “Nothing about us without us” has been the mantra of disability rights advocates for decades, but when it comes to Hollywood, the number of feature […]
