27th Annual FSHD International Research Congress Goes Virtual

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The world’s premier conference on the rare muscle disease sets an attendance record after expanding its reach by going online.

Logo of 2020 FSHD International Research Congress - Now Virtual
“The FSHD International Research Congress serves a more important role than ever to speed up progress toward delivering effective treatments to our patients and families.”

The FSHD Society announced the opening today of its 27th annual International Research Congress (IRC), which is being conducted entirely online for the first time in the organization’s history. The conference is widely seen as the premier global platform for the discussion and dissemination of state-of-the-art research on facioscapulohumeral muscular dystrophy (FSHD). A record 210 researchers, clinicians, industry representatives and patient advocates are attending.

“Due to the global COVID-19 crisis, we have deployed a robust virtual conference platform for the 2020 IRC which has opened the opportunity to participate for many researchers who previously could not afford the time or cost of travel,” noted Jamshid Arjomand, PhD, chief science officer of the Society.

Researchers who have convened at this gathering since 1994 have helped drive fundamental discoveries, arriving at a broad consensus on a central hypothesis of the genetic basis of FSHD, development of cellular and animal models, identification of multiple therapeutic targets, and the validation of clinical outcome measures. These fundamental discoveries and collaborations have advanced the field, prompting observational and clinical studies – including an ongoing Phase 2b clinical trial for the first disease-modifying therapy for FSHD as well as a large natural history study called ReSOLVE. These studies, as well as other clinical research, have responded to the challenges of collecting data while keeping volunteers safe during the COVID-19 pandemic.

The program committee made special efforts to attract clinical and industry researchers, as advancement of drug development brings greater urgency to improving the understanding of the clinical features of FSHD, genotype-phenotype correlations, natural history, and evaluation of disease progression. As a result, the number of attendees and scientific presentations has nearly doubled over the past two years.

A growing number of companies have elected to sponsor the FSHD International Research Congress as they enter the field of FSHD diagnostics and therapy development. This year’s foundation and industry supporters include: Association Français Contre les Myopathies, Avidity, Bionano, Dyne Therapeutics, Fulcrum Therapeutics, Genomic Vision, miRecule, Muscular Dystrophy Association, National Institutes of Health, PerkinElmer Genomics, and the University of Nevada Reno.

“With the recent advances in FSHD studies now including large sets of data, greater availability of biomaterials from multiple large research initiatives, and the rapid approach of more clinical trials,” the program committee stated. “The FSHD International Research Congress serves a more important role than ever: to ensure dissemination of the latest ideas and discussion of the field’s needs and priorities, combined with collaboration and coordination, to speed up progress toward delivering effective treatments to our patients and families.”

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.fshdsociety.org.

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June Kinoshita
@FSHDSociety
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