Helpful
Resources For
You And
Your Family
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.
Family information guide
Get clear and concise information about the benefits of EMFLAZA and information about PTC Cares™. Use this guide to help with talking to your son's healthcare provider during your next appointment.
DownloadActivity adventure guide
Find great ideas for playtime using this handbook. It's full of exciting activities for having fun around the house. All games range from low to high intensity and can be adjusted to meet your son's comfort level.
DownloadWeight-based Dosing guide
Annual dose adjustments associated with yearly weight changes may not be enough. Use this guide and regularly monitor your son's weight. Speak to your healthcare provider if you have questions.
Download in EnglishDownload in SpanishObtenga más información sobre emflaza en Español
Vea los datos, los recursos y otra información importante de una manera más fácil de comprender.
Información en EspañolPTC Cares™ brochure
Everything you need to know about the prescription process and patient assistance programs for EMFLAZA.
DownloadPrescription Start Form
Get your child started on EMFLAZA by completing the form with the help of your child‘s healthcare provider.
DownloadClinic visit readiness sheet
Gather and record important information or questions for your child's healthcare provider so you can make the most of your next visit.
DownloadNavigating scientific publications tool
A resource to familiarize yourself with the elements and terms that are commonly seen in different types of publications.
DownloadFind us on Facebook
Get to know other families managing DMD and learn more about EMFLAZA on our Facebook page.
VisitDuchenne
Communities
There are many organizations created to help families living with Duchenne.
Connect with a
Peer Navigator
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.
Cureduchenne
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.
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