Newly diagnosed Duchenne families often have many questions and need a place to turn to for answers as they begin to process information in their own way and at their own pace. Even patients and caregivers already on their journey with Duchenne sometimes find themselves facing new hurdles, raising the need for information. Nationally recognized organizations, such as those listed here, can serve as a valuable resource for physical, emotional and family-centered support. They provide information that you can tailor to your interests and situation by way of online guides, conferences, webinars, and regional meetings.

It is hard to imagine what needs one may have along the journey, but it feels good to know that you have someone there when you need it. Hundreds of organizations focus their efforts on assisting families of critically ill children. We tried to select a few organizations whose services relate to Duchenne. Whether you need help with an IEP at school, finding medical housing during hospitalization, planning for home modifications, or simply ensuring your child has an amazing birthday cake each year... these organizations have you covered.

Families thrust into a life of Duchenne are unprepared and often unequipped to deal with the journey ahead. It might even feel like they have lost a grip on their lives and the situation overall. Various organizations focus on enabling “normal” activities for those with life-threatening illnesses. Positive, family experiences already adapted to special needs mean you don't have to worry about anything but having fun and creating memories.

Navigating the various government and social programs that provide help to Duchenne patients can be overwhelming.  Here, we include links to various government programs.