Browsing items tagged “Research Motivation - FSHD Society”

What a New Study on FSHD and Mortality Means for Our Community

Posted on May 18th, 20265/18/26

by Amanda Hill, Research & Care Programs Officer at the FSHD Society, and Ally Roets, Parent, Caregiver, CureFSHD for All Advocate and Parents’ Roundtable Leader Many of us in […]

Filed under: FSHD Research, Health and Medicine, Living with FSHD

Tags: Basic Research, Breathing Problems, Early Onset or Infatile, Genetic Testing, Heart Health, Lung Health, Research Motivation

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