FSHD Society Convenes Inaugural Meeting of International Patient Advocacy Leaders

Monday, July 29, 2019 General News
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Delegates representing facioscapulohumeral muscular dystrophy patient organizations from 11 nations gather at a historic summit in Marseille, France

LEXINGTON, Mass., July 29, 2019 /PRNewswire-PRWeb/ -- The FSHD Society has convened the first-ever international meeting

of leaders from organizations representing individuals and families affected by facioscapulohumeral muscular dystrophy (FSHD), a genetic, muscle-weakening condition that affects nearly one million people worldwide. "With international clinical trials for FSHD therapies already under way and more on the horizon, it is critically important for groups around the world to work together," said Mark Stone, CEO and President of the FSHD Society. The US-based non-profit is the world's largest research-focused patient advocacy organization for FSHD.

The International FSHD Patient Advocacy Summit was held on June 18, 2019, in Marseille, France. Sponsored by the FSHD Society and jointly organized with FSHD Europe, the invitation-only meeting was attended by 38 delegates representing 13 organizations from Brazil, China, France, Germany, Israel, Italy, Japan, the Netherlands, Spain, UK and the US.

The attendees discussed the idea of developing an international "contact registry" or patient database that would facilitate global campaigns to educate families about FSHD research studies and drug trials. A key benefit of such a database, Stone explained, is that it enables advocacy groups to work more effectively with researchers and companies to recruit volunteers for clinical trials on an international scale.

As the first meeting of its type, attendees had the opportunity to introduce their organizations to one another. "Hearing about patient groups in the different countries was fascinating," said Sheila Hawkins, a trustee with Muscular Dystrophy UK and delegate for FSHD Europe. "It was sobering to learn that in some countries genetic testing was either unavailable or so expensive that few people could afford it."

Leading researchers gave presentations about the latest developments in clinical trials, molecular therapies, and the use of imaging technology to track disease progression. The delegates also participated in workshops to develop strategies for patient engagement, working with scientists and industry, and fundraising.

"While no one of us alone can change the world," said Stone, "the Society is bringing all stakeholders and resources to the table to focus efforts on one goal: delivering disease-modifying therapies to our families by 2025."

About the FSHD Society

The FSHD Society is the world's largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. The Society has catalyzed major advancements and is accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research and is committed to making sure that no one faces this disease alone. The Society offers a community of support, news, and information through its website at https://www.fshsociety.org.



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