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Advocacy groups play an important role in helping you connect and bond with other people affected by Duchenne as well as giving a public voice. The following patient advocacy groups are here to help by offering information, guidance, and support.
Advocacy groups such as CureDuchenne, Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) are well known within the United States. Support is not limited to these groups and there are local community groups that can help you as well.
Cure Duchenne partners with biotech and pharmaceutical companies, academic institutions, and other organizations to help find a cure for Duchenne muscular dystrophy.
MDA is a nonprofit health organization that sponsors research to find effective treatments for neuromuscular diseases.
PPMD is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne muscular dystrophy through research, advocacy, care, and education.
The Akari Foundation is dedicated to supporting Hispanic immigrant and low-income families who live with Duchenne muscular dystrophy.
The Jett Foundation partners with individuals and families with Duchenne muscular dystrophy and other neuromuscular diseases. Offers empowering educational programming, direct service experiences, and by helps accelerate development of life-changing treatments.
For patients and families facing high medical out-of-pocket costs, the fund provides financial assistance to cover costs not paid for by insurance to patients with demonstrated need.
PTC Therapeutics does not endorse organizations that sponsor linked external websites, products, or services that such organizations may offer; and does not control or guarantee the currency, accuracy, relevance or completeness of the information found on the linked external sites.
All trademarks included herein are the property of their respective owners.
Certified Care Centers provide comprehensive care and services to people living with Duchenne muscular dystrophy. The goal of these centers is to make comprehensive care available and accessible to as many patients with Duchenne and their families as possible. PTC does not warrant, whether expressed or implied, that the list of centers is accurate or complete.
The Muscular Dystrophy Association has a network of 200 specialized clinics across the United States and Puerto Rico, each with a team of healthcare professionals all at one location. Find a local clinic near you by visiting mda.org/locate, or by calling (800) 572-1717.
The Certified Duchenne Care Center Program was developed by Parent Project Muscular Dystrophy, with the help of many experts, to certify clinics and measure results, helping to ensure that centers maintain the highest standards in clinical care for Duchenne. Click here for more information and to locate a local certified center.
PTC does not recommend or endorse any center, hospital, or healthcare professional included above for any purpose, nor is the list to verify a center’s, hospitals, or specific healthcare professional’s credentials or qualifications. It is your responsibility to select a center, hospital, and/or healthcare professional appropriate to your needs, and you assume full responsibility for your interaction with any center, hospital, or healthcare professional you contact through the center list. PTC is not responsible for the medical care or advice given by any center, hospital, or healthcare professional you choose to contact.
You are about to view a website that PTC Therapeutics has not reviewed for accuracy, relevance or completeness.
PTC Therapeutics does not endorse organizations that sponsor linked external websites, products, or services that such organizations may offer; and does not control or guarantee the currency, accuracy, relevance or completeness of the information found on the linked external sites.
All trademarks includes herein are the property of their respective owners.
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This site is intended for US residents only.
The information on this site is not intended to make a diagnosis or to take the place of talking to a US health care professional.
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Date of preparation: September 2022
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Neuromuscular disorders affect the muscles and nerves, and most of the causes are genetic. This means they are either passed down through the family or caused by changes in an individual person’s genes.
Most neuromuscular disorders cause muscle weakness that worsens over time. Signs and symptoms of neuromuscular diseases can vary and may be mild, moderate, or severe.
Most often, when a child has a neuromuscular disease, they don’t grow and develop as fast as other children their age. They are often slow to start lifting their head, sitting, walking, and talking.
Treatment and supportive care may improve the symptoms of a neuromuscular disorder, increasing mobility and even life expectancy.
Muscular dystrophy is the term for a group of neuromuscular disorders that cause muscle weakness and muscle loss.
Duchenne muscular dystrophy (DMD) is a type of muscular dystrophy that causes muscle weakness that worsens over time. The progression and symptoms can vary from person to person.
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