The FSHD Society convenes the world this month in Orlando, Florida | New


The world’s leading patient advocacy organization for facioscapulohumeral muscular dystrophy brings together global stakeholders in a quartet of meetings this month

/PRNewswire-PRWeb/ — The FSHD Society has announced that it will hold back-to-back meetings this month at Orlando Florida, to bring together patients, families, researchers, clinicians, advocacy leaders, industry scientists and regulators from around the world to focus on the goal of developing treatments for Facioscapulohumeral Muscular Dystrophy (FSHD ). FSHD is a rare inherited muscle wasting disease that affects approximately one million men, women and children worldwide. It is characterized by a gradual, lifelong loss of muscle function and causes significant pain, fatigue, and disability. There is currently no medication to slow or stop the progression of symptoms.

This historic series of lectures begins on June 15 along with the Industry Collaborative Workshop, an invitation-only meeting of university leaders, regulators, funders, and 14 companies that have FSHD programs in various stages of development. The workshop will review the current state of trial readiness, including biomarkers, imaging markers, clinical outcomes, standards of care and health economics outcomes research, and seek to align on approaches to fill critical gaps.

On June 16-17scholars will gather for the Society 29th Annual International Research Conference (IRC), the first platform for sharing and discussing the latest scientific findings on FSHD. The IRC covers a wide range of research, including genetics, epigenetics, pathobiology, new drug targets, outcome measures and clinical trials. The Company’s leadership has contributed to notable advances, including the discovery of the genetic mechanism of FSHD, the identification of therapeutic targets and several clinical trials, including the phase 3 trial which will be activated in the coming month.

The IRC will be followed on June 18-19 by FSHD Login, the Society’s biennial global conference bringing together patients, family members, researchers and clinicians for two days of education, advocacy and networking. “This year’s theme is ‘Ignite’ and our conference will celebrate the patients and families who, through their active engagement in our programs, are accelerating the development of treatments,” said mark the stoneCEO and President of the FSHD Society.

The lecture series culminates with the FSHD Global Alliance, a virtual meeting of FSHD patient advocacy groups from 22 countries. With the prospect of new treatments coming to market over the next few years, the alliance is focused on developing country-by-country strategies to ensure that patients around the world will have access to these treatments.

Says Stone, “Our meetings play a vital role in ensuring that all of our stakeholders are working together, speaking with one voice, to accelerate the delivery of effective treatment to our families.”

About FSHD

The FSHD Society is the world’s largest research-driven patient organization for Facioscapulohumeral Muscular Dystrophy (FSHD), one of the most common forms of muscular dystrophy. The Society has catalyzed major breakthroughs and is accelerating the development of treatments and a cure to end the pain, disability and suffering endured by the one million people worldwide living with FSHD. The FSHD Society has transformed the landscape of FSHD research and is committed to ensuring that no one faces this disease alone. The Company offers a community of support, news and information through its website at

Media Contact

June KinoshitaFSHD Society, 7813016649, [email protected]

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