Your Resources
You are not alone! Take advantage of these community outreach programs and national support organizations that can help you connect with other folks managing a life with DMD.
Outreach Programs for Families Living With DMD
Regional education events hosted by a Patient Access Liaison (PAL)
Coffee Breaks are informal gatherings—hosted by a PAL—where patients and caregivers can meet, live or over Zoom, to discuss topics relevant to their DMD treatment journey.
Live and online educational events
A.C.E.S. Patient Ambassador Program features live local events and live webcasts, hosted by DMD Patient Ambassadors, where people can share their stories about facing and overcoming the challenges of living with DMD.
Phone mentoring with fellow DMD families
A.C.E.S. Mentor Program is a mentoring program that enables families living with DMD to talk on the phone with other patients about their personal experiences with DMD and/or treatment.
National Organizations That Offer Support
There are several organizations that support people living with Duchenne muscular dystrophy and rare diseases, including:
The Akari Foundation focuses on educating and empowering the Hispanic community on rare diseases, help with resources, awareness, advocacy, and education, specializing in Duchenne muscular dystrophy.
Austin’s Hope aims to bring HOPE to those affected by Duchenne muscular dystrophy. Their mission is to fund research and better the lives of those impacted.
Best Day Ever Foundation dedicates their time to supporting families living with Duchenne muscular dystrophy through education and building a community of relationships.
CureDuchenne is an organization committed to finding a cure for Duchenne muscular dystrophy using innovative venture philanthropy to fund groundbreaking research, early diagnosis, and treatment access.
Every Life Foundation is a nonprofit organization that advocates for those who are a part of the rare disease community, giving them a voice and allowing their stories to be told.
Global Genes is a rare disease patient advocacy organization that works to build awareness, educate the global community, and provide connections and resources.
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne organization.
Kindness Over Muscular Dystrophy has a mission to provide charitable giving to support Muscular Dystrophy research as well as benevolent assistance and advocacy to those in need.
Little Hercules Foundation works to improve the lives of those diagnosed with – and families facing – Duchenne Muscular Dystrophy through advocacy, awareness, family assistance, and funding research.
Muscular Dystrophy Association (MDA) is an organization started by a concerned group of caring families. Since 1950, the MDA has relentlessly pursued their promise to free families from the life-threatening effects of muscular dystrophy and muscle-debilitating diseases.
National Organization for Rare Disorders (NORD) is an organization committed to the identification, treatment, and cure of rare disorders through educational programs, advocacy, research, and patient services.
Parent Project Muscular Dystrophy is the largest Duchenne-specific patient advocacy organization whose mission is to end Duchenne by accelerating research, raise awareness to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.
Team Joseph fights for all children and young adults battling Duchenne muscular dystrophy. They are committed to ensuring every child with Duchenne receives the care, medical equipment, and support they need to live a full life, regardless of their financial situation.
Walking Strong is an organization that supports those with Duchenne Muscular Dystrophy. They strive to build a future where individuals affected have access to comprehensive support, cutting-edge scientific research, and a strong and compassionate community.