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Resources
By providing you with these materials, we can help you better understand how to help manage Duchenne muscular dystrophy. You can download these materials right to your desktop.
A Summary of the DMD Care Considerations Working Group for Caregivers (English & Spanish)
Learn more about care guidelines for DMD that address a multidisciplinary approach and the continuum of care for DMD management.
Download Care Consideration—English ›
Download Care Consideration—Spanish ›
Navigating Scientific Publications Tool
Use this resource to familiarize yourself with the elements and terms that are commonly seen in different types of publications.
Download Navigating Scientific Publications Tool ›
REACH OUT TO THE DUCHENNE COMMUNITY
The Duchenne community can offer support to you and your family in many different ways.
ADVOCACY GROUPS ARE READY TO HELP
We know that there is more to treatment than just taking care of symptoms. You and your family also have your own individual interests and support needs. 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 in your community
Advocacy groups such as CureDuchenne, Muscular Dystrophy Association (MDA) and Parent Project Muscular Dystrophy (PPMD) are well known within the United states however support is not limited to these groups and there are local community groups that can help you as well.
| Cure Duchenne | Muscular Dystrophy Association (MDA) | Parent Project Muscular Dystrophy (PPMD) |
|---|---|---|
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| 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. |
| https://cureduchenne.org/ | https://mda.org/ | https://parentprojectmd.org |
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.
FIND A CERTIFIED DUCHENNE CARE CENTER NEAR YOU
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, hospital’s, 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.