ACCESS MORE. DOWNLOAD RESOURCES AND FIND COMMUNITY SUPPORT.
Connect with the Duchenne muscular dystrophy (DMD) community.
The DMD community is supported by organisations around the world. These groups serve to advocate for patent rights, support research efforts, build connections, and much more.
This page lists some DMD-related organisations and is to serve as a resource only. Santhera Pharmaceuticals does not review, approve, or control the content of these third-party websites, and your visiting these third-party websites is at your own risk. Santhera Pharmaceuticals has no responsibility or liability of any kind for these linked third-party websites.
The World Duchenne Organisation
The World Duchenne Organisation is a global organisation dedicated to finding a cure and viable treatments for DMD, promoting good standards of care, and informing parents and people living with DMD around the globe. Go to worldduchenne.org to learn more about their mission and available offerings.
France
AFM Téléthon - Association Française contre les Myopathies. Go to afm‑telethon.fr.
Xtraordinaire - Association Nationale des Retards Mentaux liés au chromosome X. Go to xtraordinaire.org.
UNAPEI - Union Nationale de parents, de personnes handicapées mentales et de leurs amis. Go to unapei.org.
Germany
DGM - Deutsche Gesellschaft für Muskelkranke e.V. Go to dgm.org.
DMH - Deutsche Muskelschwund-Hilfe e.V. Go to muskelschwund.de.
Aktion benni & co e.V. Go to duchenne-deutschland.de.
Marathon - Verein von Eltern und Angehörigen gegen Muskelerkrankungen
bei Kindern.
Go to
https://www.verein-marathon.at/.
Italy
Parent Project. Go to parentproject.it.
United Kingdom
Action Duchenne. Go to actionduchenne.org.
Muscular Dystrophy UK (MDC). Go to musculardystrophyuk.org.
Duchenne Family Support Group (DSFG). Go to dfsg.org.uk or call +44 0800 121 4518.+44 0800 121 4518.
Patient organisations in the US
CureDuchenne
With a mission to cure DMD, CureDuchenne partners with biotech and pharmaceutical companies, academic institutions, and other organisations to help find a cure for DMD. Visit cureduchenne.org to discover helpful resources for you and your patients and their caregivers.
Jett Foundation
Started in 2001, this foundation's mission is to empower members of the DMD community with educational opportunities, service programs, and funding for DMD research. Go to jettfoundation.org to learn more about their outreach.
Little Hercules Foundation
Little Hercules is dedicated to improving the lives of people and families who are facing DMD through advocacy, awareness, family assistance, and fundraising. Go to littleherculesfoundation.org for more.
Muscular Dystrophy Association (MDA)
A caring and concerned group of families started MDA in 1950, an organisation that continues to relentlessly pursue their promise to transform the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases.
In addition to many support services for your patients, go to mda.org to access a robust library of clinical programs including MDA professional medical education, grand rounds webinars, care case studies, peer-to-peer slide sets, and clinical industry webinars.
Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy fights to end DMD. They accelerate research, raise their voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies. Visit parentprojectmd.org to find out more.
Team Joseph
Founded by the family of a patient with DMD, Team Joseph provides funding for disease research and family assistance for those dealing with the DMD. To get assistance or learn more go to teamjoseph.org.
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For patients and families
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