DMD patient organizations

Action Duchenne are dedicated to finding a cure for Duchenne. They are raising funds to research for new drugs that are more effective and potent than steroids. They want to push forward their campaign to increase the number of Centres of Excellence.

Created in 1958 and managed by a group of patients and their families, AFM has become a strong organisation combining the militant energy of its founding members, the professionalization of its volunteer managers and the commitment of its employees. AFM is involved in the development of scientific tools for the study of genetic and rare diseases in general, and provides scientists with new means and knowledge to accelerate understanding of genetic diseases and open treatment avenues based on an understanding of the genes.

Charley's Fund directs money into the hands of researchers and biotechnology companies that have the best shot at developing treatments for Duchenne Muscular Dystrophy. Our goal is to cure DMD in time to save Charley's life and the lives of thousands of boys like him worldwide.

Charley's Fund takes a hands-on approach to funding medical research and drug-development.  Our spinout biotech company, Dart Therapeutics, complements our efforts by negotiating structured deals with IP holders and playing an operating role in the development of new treatments.

China DMD Care and Support Association (CCSA) was set up officially on July 10th 2011 by a group of dedicated parents of DMD/BMD boys in Beijing. Focussing on the estimated 100,000 DMD/BMD patients in China the association brings together clinicians and researchers whilst helping with rehabilitation and counselling for patients. CCSA also provides updates on international research information and maintains communication links with international community groups and local patients whilst also organizing patient events and financial support.

CureDuchenne is a grassroots effort to bring back focus and are a not for profit making organization. CureDuchenne was started by parents whose only child has DMD.

The Duchenne Family Support Group (DFSG) exists to provide support for families. The DFSG was started in 1987 by a small group of parents who had children diagnosed as having Duchenne Muscular Dystrophy.

The Duchenne Foundation, a member of the United Parents Projects, works to improve the lives of Australian persons and families affected by Duchenne and Becker muscular dystrophy. Using national and international collaboration they aim to improve the treatment, quality of life and long-term outlook of patients with of DMD and BMD through research, education and advocacy.

Duchene Ireland is a patient organization and registered Irish Charity (CHY 18197) established to facilitate funding translational research into Duchene Muscular Dystrophy and are affiliated with numerous patient groups and clinical, research and support networks for DMD. Duchene Ireland works internationally to rapidly advance research into Duchene and welcomes organization, parents and supporter who believe they can help to forward progress in this research.

DMDfund is a non-profit organization founded by parents, relatives and friends of kids who have DMD. DMDfund is dedicated to finding a cure for DMD by funding research, so that millions of kids worldwide can live.

Duchenne Now is dedicated to finding and funding treatments and eventual cure for ALL living with Duchennne and Becker MD. Duchenne Now was officially launched on March 1st 2012, with a fresh approach to achieving our goals.

Guided by the foundation president Elizabeth Vroom the Duchenne Parent Project in the Netherlands is an organization founded by parents of children with Duchenne muscular dystrophy. The project's website contains information in Dutch about DMD and the foundation itself along with, their activities and Duchenne Heroes. 

DuchenneConnect serves as a central hub linking the resources and needs of those living with Duchenne/Becker muscular dystrophy and the professional community, including clinicians, policymakers, industry professionals, and medical researchers.

The Foundation to Eradicate Duchenne was established by Dana and Joel Wood of Alexandria, Virginia. Their son James Wood was diagnosed in May 2000 with Duchenne Muscular Dystrophy. The Woods are both lobbyists in Washington, D.C., and have devoted much of their time and energies to this cause, working with others to achieve millions of dollars in federal earmarks for Duchenne Muscular Dystrophy research and a significant increase in the attention devoted to DMD at the National Institutes of Health.

Fundation Gyógyító Jószándék – DMD- Izombeteg Gyermekek Alapítványa - Foundation for Families Caring for DMD children – FGJ

The Foundation for Muscular Dystrophy Research was founded in 1986 by Elwyn and Christina Mandley and Jarl Mared.

Its purpose is to support research and disseminate information on Duchenne and Becker muscular dystrophy and since its beginning the foundation has supported several research projects and organized several symposia.

"Little Steps" is an organization which was founded in Israel by parents of children with Duchenne and Becker muscular dystrophy diseases, wanting to be as a second "home" for the children and their families who are coping with physical and mental difficulties caused by the disease.

The foundation aims to provide a networking platform for the DMD community and increase the chance of eventually finding a cure for the children affected by the disease. We keep track of research conducted in Hungary and abroad and publish summaries of these efforts. Our foundation also plans to finance DMD research and provide researchers and doctors with grants to finance their studies and professional training.

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

The Muscular Dystrophy Campaign has funded high quality research into neuromuscular disorders for the last 50 years. They provide free care and support for babies, children and adults affected by muscle disease, fund world-class research to find treatments and cures, provide grants towards equipment and campaign to raise awareness and bring about change.

Parent Project is an association of parents and relatives whose children are born with Duchenne / Becker muscular dystrophy Duchenne. Parent Project was established in the U.S. in 1994 and our organization in the Czech Republic was officially registered in 2001.

Parent Project Association was started by parents with children affected by Duchene and Becker muscular dystrophy. Since 1996 it has worked together to accelerate the achievement of a therapy and to ensure and promote the best chance of treatment needed to raise the quality of life of children suffering from muscular dystrophy.

The association was founded in March 2004 by a small group of parents and grandparents of children who were diagnosed with Duchenne muscular dystrophy. The Association For Muscular Dystrophy Research and Assistance is a non-profit making association and is guided by the organisation's president Isabela Tudorache.

Duchenne Parent Project France is the non-profit association local branch of a European and International network of organizations all founded and managed by parents of Duchenne children (USA, UK, Australia, Netherlands, Germany, Italy, Monaco).

Parent Project Muscular Dystrophy (PPMD) is the largest nonprofit organization in the United States focused entirely on Duchenne.

They take a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options.

Only this comprehensive approach will lead to the ultimate success—the day that 100% of those diagnosed can turn to a treatment that will end Duchenne.

Progena was founded in 2006 by the parents of a Duchenne boy. When they had to come to terms with their son's diagnosis, they didn’t find much help from existing infrastructures, whether public or private.

United Parent Projects Muscular Dystrophy (UPPMD) is owned and managed by parent project organisations set up by parents of children with Duchenne Muscular Dystrophy in many different countries all over the world. These national projects are run by parents for parents. UPPMD is managed by parents who lead the national parent projects.

The organisation came together after we realised that there was no sense in working in isolation from each other. We all share the same aims and dreams and they can be realised more efficiently using collective experiences and resources.

Leslie Guzman established UPA! cura Duchenne in 2007 with the purpose of integrating under one emblem and name the diverse efforts of leading Latin and Ibero-American organizations focused on treatment, therapies, and a cure for Duchenne and other neuromuscular disorders.