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Updated Family Guide

Standards of Care

In line with the three articles about care considerations for DMD recently published in Lancet Neurology 1-3, a new Duchenne Family Guide has been developed and was launched online on World Duchenne Awareness Day, September 7, 2018.

The development of the updated care considerations was funded by the U.S. Center for Disease Control. These updates offer the latest clinical considerations to improve care, services, and quality of life for people living with Duchenne, raise the standards of care for Duchenne and will assist clinicians in making the best possible recommendations for these patients.

Thanks to the collaboration of four not-for-profit organizations — the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD and the World Duchenne Organization UPPMD — a thoroughly updated and re-drafted Duchenne Family Guide was developed.

This guide will give patients, families and caregivers access to the information necessary to enable them to work with their health care and support providers in ensuring optimal care. The Duchenne Family Guide will be translated and published online on the TREAT-NMD website in many languages, with the help of the global Duchenne community.

Family Guide translations 2018

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Family Guide translations 2010

Additional information

For more information contact:

Cathy Turner, TREAT-NMD

Elizabeth Vroom, World Duchenne Organization

Nancy Intrator, Muscular Dystrophy Association

Will Nolan, Parent Project Muscular Dystrophy (PPMD)

Thanks to the contribution of:

TREAT-NMD: www.treat-nmd.eu

PPMD: www.parentprojectmd.org

MDA: www.mda.org

Educational videos: www.dmd-care.org

References:
  1. Lancet Neurol. 2018 Mar;17(3):251-267. doi: 10.1016/S1474-4422(18)30024-3
  2. Lancet Neurol. 2018 Apr;17(4):347-361. doi: 10.1016/S1474-4422(18)30025-5
  3. Lancet Neurol. 2018 May;17(5):445-455. doi: 10.1016/S1474-4422(18)30026-7

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Implementing the latest Standards of Care