Caring for a child affected by DMD can be overwhelming. Learning as much as you can about the disease and educating yourself about the support materials available to you can help you feel more grounded and in control. By providing you with these materials, we can help you better understand how EMFLAZA can help treat DMD.
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There are many organizations created to help families living with Duchenne.
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The peer navigator program
Talk to other parents about Emflaza and DMD
The Peer Navigator Program can put you in contact with other families who understand your journey. Learning how others have managed challenges and achieved successes can help you gain insight into decisions you may need to make for your family. You can choose to speak with English or Spanish‑speaking navigators, according to your preferences.
The Akari Foundation
A group dedicated to educating, empowering, and advocating for the Hispanic immigrant community. They help with connecting families and providing resources in Spanish about rare diseases, specializing in DMD.
This nonprofit organization supports Duchenne-related research and features events, workshops, and webinars on their site, which is available in Spanish. Visit www.cureduchenne.org to learn more.
Muscular Dystrophy Association (MDA)
There are more than 150 MDA care clinics in the United States and Puerto Rico with each location home to a full team of healthcare professionals. To find a specialized MDA clinic near you, visit www.mda.org/care/mda-care-centers or call 1-800-572-1717.
Parent Project Muscular Dystrophy (PPMD) Certified Care Centers
PPMD centers provide comprehensive care and services specifically for people living with Duchenne muscular dystrophy. These centers strive to provide accessible and comprehensive care to as many patients and families as possible. Centers certified by PPMD can be found at www.parentprojectmd.org/carecenters. Support and care materials in Spanish can also be found at www.parentprojectmd.org/care/care-and-support-materials/care-and-support-materials-spanish/.
PTC does not warrant, whether expressed or implied, that the list of centers is accurate or complete. 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 for your needs, and you assume full responsibility for your interactions 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.Considering a switch