[…] to the Kansas City Chapter! Thank you for visiting the Kansas City Chapter of the FSHD Society which officially launched in August 2019. We are here to build a local […]
Kansas City Chapter
Collaborating to collect clinical trial data
FSHD Society and Critical Path Institute will aggregate data in C-Path’s Rare Diseases Cures Accelerator-Data and Analytics Platform The FSHD Society announced that it has partnered with Critical Path […]
What to do in a crisis
[…] crises are prevalent in our community. Help is out there Kylee Helmke A diagnosis of FSHD poses life-long challenges. Individuals live with an undercurrent of anxiety about how their symptoms […]
Calgary 360 slides
Here are the slides from the Calgary FSHD 360 meeting on March 16, 2024. Welcome! What is a 360? What is the CTRN? Beth Johnston, FSHD Society, and Neil Camarta, […]
Aging in place – Tips for planning ahead
[…] brings change. Life would be boring if it didn’t encompass change. Yet the changes that FSHD brings to us are more intense than most—-if not all—-of us would voluntarily choose. […]