Additional Support
Additional Support
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National Organizations That Offer Support
There are several organizations that support people living with Duchenne muscular dystrophy and other 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.
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.
cureduchenne.org »
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.
The 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.
NIH Genetic and Rare Diseases (GARD) Information Center provides access to current, reliable, and easy-to-understand information about rare or genetic 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, raising awareness to impact policy, demanding optimal care for every single family, and striving 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.
Community Updates
You Are Part of a Larger Community
Living with a rare disease, such as Duchenne muscular dystrophy (DMD), can be isolating. But you’re really not alone. There are thousands of other people dealing with similar challenges. Many of those living with DMD have found answers, fellowship, and a voice on the Catalyst Patient Facebook Community page. Check out some of the posts below—you may find a helpful tip you can use or the encouragement you’ve been looking for!
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