Learn The BasicsThere are many associations and non-profit organizations that provide help and support for people living with Duchenne muscular dystrophy (DMD) and their families. The websites of these organizations also include information about ongoing research in the field.
Muscular Dystrophy Association (MDA)
The Muscular Dystrophy Association (MDA) is the number one voluntary health organization in the US supporting people living with muscular dystrophy including DMD. The MDA aims to accelerate research, advance care and advocate for the support and inclusion of families living with muscular dystrophy or other neuromuscular conditions.
CureDuchenne
CureDuchenne is another US-based organization supporting people living with DMD and their families.
The aim of CureDuchenne is to improve the lives of people affected by DMD by accelerating research to find a cure for the disease, improve care and empower the DMD community.
Parent Project Muscular Dystrophy (PPMD)
Parent Project Muscular Dystrophy (PPMD) is a non-profit organization dedicated to fighting DMD.
Founded in 1994 by Pat Furlong, a mother whose two sons were diagnosed with the disease and a group of parents and grandparents, PPMD aims to accelerate research, impact policy and ensure the best possible care and access to new therapies for every patient affected by the disease.
Muscular Dystrophy UK (MDUK)
Muscular Dystrophy UK (MDUK) is the leading UK charity supporting people living with muscle wasting and weakening conditions including DMD.
The charity provides support and information and funds research in the field of neuromuscular diseases.
Action Duchenne
Action Duchenne is another UK-based charity supporting people affected by DMD.
The objectives of the Action Duchenne are to develop effective treatments by funding research, supporting clinical trials and campaigning for access to treatment, build a community by uniting and supporting families, educating about the disease and raising the profile of the condition and ensure a more inclusive society by promoting the importance of human equality, day to day acceptance of disability and accessibility.
Duchenne UK
Duchenne UK is a charity founded by two mothers whose sons were diagnosed with DMD in 2011 with the aim of ending the disease. The charity has grown quickly since its founding and is now supported by a small team of operations, fundraising, and communications staff and volunteers.
The mission of Duchenne UK is to connect the best researchers with industry, the UK National Health Service and families.
The key areas of work of the charity are funding medical research in the field of DMD, accelerating access to treatments, improving the lives of those affected by the disease through technology and ensuring that everyone in the DMD community receives the care and support they need.
World Duchenne Organization (WDO)
The World Duchenne Organization (WDO) is a worldwide umbrella organization of national patient organizations dedicated to finding a cure and viable treatments for DMD, promoting good standards of care and informing parents and patients worldwide.
Duchenne Data Foundation (DDF)
The Duchenne Data Foundation (DDF) works closely with the WDO to achieve the best possible outcome for patients living with DMD and Becker muscular dystrophy and those carrying the disease-causing mutation, worldwide.
The DDF connects data to generate new evidence for better and faster research to develop new therapies for the disease, ensure people affected by the disease can access the latest standards of care, facilitate the exchange of timely and accurate information and advocate for patients to be in control of their own data.