Resources
There are many resources to support families living with Duchenne.
Where to find support
Many organizations provide resources, support, and education for families living with Duchenne including CureDuchenne, the Muscular Dystrophy Association, and Parent Project Muscular Dystrophy.
Alongside these groups, there are numerous other nonprofit organizations supporting families in a variety of important ways. Here is a sampling of topics and places to explore.
Advocacy and Government Policy
What can we do to learn more about policy regarding rare diseases, and how to get more involved?
Advocacy and Government Policy
What can we do to learn more about policy regarding rare diseases, and how to get more involved?
RARE Foundation
Care Centers
Duchenne requires a team of specialists and coordinating the care can be difficult, are there any care centers near me?
Care Centers
Duchenne requires a team of specialists and coordinating the care can be difficult, are there any care centers near me?
Carrier / Female with Dystrophinopathy
What information is out there specifically for carriers and females with dystrophinopathy?
Carrier / Female with Dystrophinopathy
What information is out there specifically for carriers and females with dystrophinopathy?
Diagnosis, Genetics & Screening
Where can I learn more about the Duchenne diagnosis, screening, and genetics?
Diagnosis, Genetics & Screening
Where can I learn more about the Duchenne diagnosis, screening, and genetics?
Emergency Preparation Resources
How do I know what information or resources are needed for urgent medical situations? (always contact 911 or your Healthcare Professional for medical emergencies)
Emergency Preparation Resources
How do I know what information or resources are needed for urgent medical situations? (always contact 911 or your Healthcare Professional for medical emergencies)
CureDuchenne
Jett Foundation
PPMD
Events, Webinars & Training
How can I find educational events and opportunities to connect with other families in my area?
Events, Webinars & Training
How can I find educational events and opportunities to connect with other families in my area?
CureDuchenne
Jett Foundation
MDA
PPMD
Team Joseph
Please note that the organizations listed are not an exhaustive list of available resources. Many local organizations and events exist across communities, and several of the organizations highlighted here may be able to provide referrals or connections to local support networks and opportunities.
Family Assistance & Practical Resources
Where can I turn for financial help with things like a wheelchair van, home remodeling, attending educational conferences, or transportation support?
Family Assistance & Practical Resources
Where can I turn for financial help with things like a wheelchair van, home remodeling, attending educational conferences, or transportation support?
Insurance Navigation
I need help getting access to prescribed treatments or care, is there an organization that can support me through this process?
Insurance Navigation
I need help getting access to prescribed treatments or care, is there an organization that can support me through this process?
One on One
I just need to talk with someone who might understand what I'm going through person to person. Is there a place to request a one on one conversation?
One on One
I just need to talk with someone who might understand what I'm going through person to person. Is there a place to request a one on one conversation?
Physical Therapy
I understand the importance of physical therapy. What do I need to know and where can I watch some training videos?
Physical Therapy
I understand the importance of physical therapy. What do I need to know and where can I watch some training videos?
CureDuchenne
Recreation
What organizations have active programming (like adaptive sports and summer camps) that people living with Duchenne can participate in?
Recreation
What organizations have active programming (like adaptive sports and summer camps) that people living with Duchenne can participate in?
Registry
How can we participate to help further research in people living with Duchenne?
School Preparedness / Scholarships
I'm looking to prepare my child for school. Where can I turn to for guidance on how to work with the school to assist with appropriate activies or IEP's. What about scholarships?
School Preparedness / Scholarships
I'm looking to prepare my child for school. Where can I turn to for guidance on how to work with the school to assist with appropriate activies or IEP's. What about scholarships?
CureDuchenne
JB’s Keys to DMD
MDA
Social-Emotional Wellbeing
I am struggling to address challenges related to social-emotional wellbeing. Where can I get help?
Social-Emotional Wellbeing
I am struggling to address challenges related to social-emotional wellbeing. Where can I get help?
Please talk to your doctor if you are struggling with your mental health. Additional resources are provided below.
Jett Foundation
MDA
Spanish Translation
Where can I find resources in Spanish?
Akari Foundation (en Español)
CureDuchenne
Please use language selector for Spanish.
Support & Community Programs
I want to talk to people who understand what I am going through. Where do I find support groups and community?
Support & Community Programs
I want to talk to people who understand what I am going through. Where do I find support groups and community?
CureDuchenne
Jett Foundation
Little Hercules
Clinical Studies
We remain focused on generating additional data to support the safe and effective use of therapies.