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 a new drug, it needs to know whether the drug works better than treatments that patients are using now. Help us prepare for our meeting… Read More »
How are you treating symptoms now?
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 the impacts FSHD, including the worries that you have about the future for yourself and your loved ones. An important aspect of FSHD is how… 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 to the FSHD Connect meeting in 2018 in Las Vegas. It’s sort of ridiculous that I hadn’t gone until then, especially when the Society is… 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 February 29th, people around the world will gather to increase knowledge about rare diseases and how they impact patients’ lives. Rare Disease Day promotes awareness… Read More »
Which symptoms have the biggest impact on your life?
On April 21, the FSHD Society is convening its landmark Voice of the Patient Forum, our community’s opportunity to testify to the FDA on the impact FSHD. An important question to answer is, which symptoms have the biggest impact on your life? Your testimony will result in a Voice of the Patient Report that will… Read More »