CureDuchenne Resource Library

Welcome to the CureDuchenne Resource Library, an ever-evolving hub of information for families, healthcare providers, patient advocates and individuals at every stage of their journey with Duchenne muscular dystrophy. Here, you’ll find information from world-class specialists on topics that span a wide range of disciplines related to CureDuchenne’s three pillars: cure, care, and community. Please share these resources with family members, friends, colleagues and the general Duchenne community.

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Beginning the Journey

The red dot signifies content and resources that might be most beneficial to those who have recently begun their Duchenne journey (diagnosed 0-3 years) or those seeking introductory-level information.

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Growth and Transformation

The light blue dot signifies content and resources that might be most beneficial to those who have carved out a path on their Duchenne journey (diagnosed 3-6 years) or those with a foundational knowledge of Duchenne seeking intermediate-level information.

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Spreading Wisdom

The dark blue dot signifies content and resources that might be most beneficial to those who have been on their Duchenne journey for more than a few years (diagnosed 6+ years) or those with an adept knowledge of Duchenne seeking advanced-level information.

Clinical Care

The Clinical Care section provides information on topics related to the standards of care for Duchenne, care coordination, transition guidelines and more. 

COMMUNITY

The Community section provides information on topics related to finding and building a supportive community, family support resources, inspiring messages from young men with Duchenne and more.

EQUIPMENT

The Equipment sections provides information on topics related to durable medical equipment, assistive technology, the insurance process and more. 

FINANCIAL ASSISTANCE

The Financial Assistance section provides information on topics related to assistance programs for Duchenne families, insurance denials, special needs resources and more.

INDUSTRY PRESENTATIONS

The Industry Presentations category provides information and updates from biotech and pharma companies with programs focused on Duchenne. These presentations are updated as new information is provided to CureDuchenne.

MENTAL HEALTH

The Mental Health section provides information on topics related to coping with a Duchenne diagnosis, behavioral intervention, depression/anxiety in the family and more.

PHYSICAL THERAPY

The Physical Therapy section provides information of topics related to stretching regimens, activity guidelines, caregiver safety tips and more.

RECURSOS EN ESPAÑOL

La categoría Recursos en español proporciona información sobre una variedad de temas para la comunidad de habla hispana de Duchenne.

RESEARCH AND CLINICAL TRIALS

The Research and Clinical Trials section provides information on topics related to the Duchenne research pipeline, varying treatment approaches, navigating clinical trials and more.

SCHOOL

The School section provides information on topics related to communicating with schools, IEPs, accommodations/modifications and more. 

Contact the CureDuchenne Cares Team – email Cares@CureDuchenne.org

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