"Sometimes I feel like I need the help of others to take on the challenges of my child’s disease."

Children with Duchenne need a team of healthcare professionals to help manage the disease

The following resources can help you find trusted and comprehensive care for your child with Duchenne:

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.

Whether you think your child might have Duchenne, or your child has just been diagnosed with the disease, download this discussion guide to help you have a productive discussion with the doctor.

It is important to know that you are not alone and that there are others that understand the challenges that you are facing. The following patient advocacy groups are here to help by offering information, guidance, and support.

US Resources:

Coalition Duchenne raises global awareness for Duchenne muscular dystrophy, to fund research and to find a cure. Its vision is to change the outcome for boys and young men with Duchenne, to rapidly move forward to a new reality of longer, fulfilled lives, with a focus on pulmonary and cardiac initiatives.

CureDuchenne partners with biotech and pharmaceutical companies, academic institutions, and other organizations to help find a cure for Duchenne muscular dystrophy.

Decode Duchenne provides free genetic testing, interpretation, and counseling for people with Duchenne or Becker muscular dystrophy who have been unable to access genetic testing in the past due to financial barriers.

DuchenneConnect is an international registry, administered by Parent Project Muscular Dystrophy, that connects the Duchenne and Becker community to clinical trial recruitment and the latest educational resources.

Global Genes is a global patient advocacy organization that aims to eliminate the challenges of rare diseases through awareness, education, and resources.

The Jett Foundation is an organization whose mission is to increase worldwide awareness of Duchenne muscular dystrophy with the purpose of raising and appropriating funds for research that will realize a cure for this disease and ensure that children will have an opportunity to enjoy a full life.

kNOWyourDuchenne provides access to genetic testing, interpretation, and support services.

Let’s Skip Ahead is an online resource that provides information about genetic testing, exon skipping, and clinical trials.

Muscular Dystrophy Association is a nonprofit health organization that sponsors research to find effective treatments for neuromuscular diseases.

National Organization for Rare Disorders provides support for members of the rare-disease community through programs and services that focus on improving the lives of individuals and their families.

Parent Project Muscular Dystrophy (PPMD) is the largest, most comprehensive nonprofit organization in the United States focused on ending Duchenne muscular dystrophy through research, advocacy, care, and education.

 

 Canada Resources:

Stand for Duchenne is a new organization which seeks to unite families and improve the lives of Canadian’s living with Duchenne muscular dystrophy. 

Jesse’s Journey is dedicated to funding research related to Duchenne muscular dystrophy. 

Foundation LaForce provides tools to families living with DMD so that they can become efficient advocates for the right to treatment.  

Muscular Dystrophy Canada is dedicated to raising awareness and educating people about neuromuscular disease.