Meet the Team: FSHD Society

The FSHD Society is the world’s largest research and patient advocacy organization dedicated to facioscapulohumeral muscular dystrophy (FSHD). Since its founding in 1991, the Society has led the charge in advancing research, patient advocacy, and support for those living with FSHD.

In recent years, the FSHD Society has launched groundbreaking initiatives, such as Project Mercury, a global advocacy program designed to amplify the patient’s voice in therapeutic development and ensure that patient needs remain central to the advancement of care. The Society’s commitment to collaboration and innovation has made it a vital force in the rare disease space.

Chief Operating Officer Ken Kahtava explains why the FSHD Society is involved in PaLaDIn:

“The Society has worked internationally for many decades in our mission to accelerate treatments to FSHD patients. The PaLaDIn Project gives FSHD patient advocacy organizations involved in Project Mercury the opportunity to apply these tools across Europe. PaLaDIn also calls for us to convert Project Mercury into standard operating procedures that other rare disease communities can adopt, launching their own versions. At the same time, our involvement in PaLaDIn enables Project Mercury to benefit from the creation of an innovative new data platform and collaboration with other consortium members to achieve our goals. Altogether, this makes the Society’s considerable commitment to the PaLaDIn Project highly valuable to the FSHD and larger rare disease communities.”

The FSHD Society contributes to PaLaDIn its expertise in advocacy, patient engagement, and learnings from the development of BetterLife FSHD, a novel research platform engaging patients with health management tools. By participating in PaLaDIn, the Society is helping to shape the future of care for people living with neuromuscular diseases.