First-Ever FSHD Evidence-based Care Guideline Published by the American Academy of Neurology

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Guideline is a landmark step forward for the diagnosis; comes as a result of FSH Society’s advocacy efforts over the past 20 years

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“We expect that this guideline will fill that evidence gap for both the people who live with these rare disorders and the healthcare professionals who treat them.”

The FSH Society, the Massachusetts-based charity that has transformed the science of the little-known and incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced the introduction of the first-ever care guideline for FSHD by the American Academy of Neurology (AAN). The FSHD care guideline is published today.

This new guideline condenses the results of nearly 60 peer-reviewed studies into a set of recommendations that doctors can easily follow to evaluate, diagnose and manage the care of FSHD patients. This monumental development is among the fruits of the Society’s 20 years of advocacy and its role in the writing and the passage of the Muscular Dystrophy Community Assistance Research and Education Act (MD CARE Act 2001, 2008 and 2014), which mandated the U.S. Centers for Disease Control increase its efforts on adult muscular dystrophy and now specifically FSHD.

“Before this publication, there were no evidence-based care guidelines for FSHD,” said Julie Bolen, PhD, MPH, epidemiologist, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC). “We expect that this guideline will fill that evidence gap for both the people who live with these rare disorders and the healthcare professionals who treat them.”

“Together with the CDC, AAN and the AAN Board of Directors, we are pleased to have been a part of the process of developing an evidence-based care guideline for patients with FSHD and their families,” said Daniel Perez, president and CEO of the FSH Society. “We believe the guideline represents a solid foundation on which to begin to standardize and improve on care given to FSHD patients. We look forward to expanded guidelines, particularly around orthotics and aquatherapy, as controlled trials are completed in the future.”

About the FSH Society

The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For seven consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than four percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

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