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Cure Duchenne Resource Library
Welcome to the Duchenne Resource Library, an ever-evolving information hub 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.
CureDuchenne 1:1 provides meetings with our scientists, physical therapists, Duchenne parents, fundraising team and family support resource coordinators.
Beginning the Journey
The red dot signifies content and resources that are particularly useful for individuals who have been recently diagnosed (within the last 0-3 years) or those seeking introductory-level information.
Growth and Transformation
The light blue dot signifies content and resources that are most beneficial for those who have been on their Duchenne journey for 3-6 years or those with a foundational understanding of Duchenne seeking intermediate-level information.
Spreading Wisdom
The dark blue dot signifies content and resources most beneficial for those who have been on their Duchenne journey for 6+ years or those with advanced knowledge seeking expert-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