As communities everywhere take steps to reduce transmission of COVID-19, we would like to share some information provided by our panel of medical advisors. For most individuals with FSHD, the… Read More »
FSHD and COVID-19
How are you treating symptoms now?
Our Voice of the Patient Forum on April 21st is our community’s platform to testify to the FDA on the impact of FSHD. When the FDA considers whether to approve… Read More »
What worries you about the future?
Our Voice of the Patient Forum on drug development for FSHD will take place on April 21st. This landmark event is our community’s platform to testify to the FDA on… Read More »
FSHD Connect is a game changer
by Jennifer Egert, PhD, New York City After being involved with the FSHD Society for more than 10 years, participating in fundraisers, social media, and events, I finally made it… Read More »
FSHD and Rare Disease Day
Celebrate Rare Disease Day on February 29th! Rare Disease Day takes place annually on the last day of February, a month known for having a rare number of days. On… Read More »