Browsing items tagged “Drug Development - FSHD Society”

A man in a suit stands at a podium between two large screens. The screen on the right says "Rare Trials Summit" and the screen on the left shows a slide from his presentation.

Summary of the Rare Trials Summit

Posted on September 18th, 20259/18/25

Author: Dr. Raymond A. Huml, Vice President, Rare Disease Strategy, Sciensus The Rare Trials Summit in Boston, held on September 9 & 10, 2025, was the inaugural event driven by […]

Filed under: FSHD Research

Tags: Basic Research, Clinical Research, clinical trials, Drug Development, Research Motivation

Living with FSHD can feel hopeless, but there are real ways to make a difference

Posted on August 17th, 20258/17/25

by Sam Feldman If you have FSHD (or are close with someone who does), you probably know that mix of frustration, fear, and “will anything ever actually help?” I’ve been […]

Filed under: Living with FSHD

Tags: Advocacy, Drug Development, Social Support, Stories, Walk and Roll