Support solutions for myotonic dystrophy: European associations
The Federation of European Myotonic Dystrophy Associations offers support services in French and English for those suffering from myotonic dystrophy. Contact our team today to learn more and get your free quote.
French
| RESOURCE | EDITOR | DESCRIPTION | LINK | DATE |
| Report | AFM-Téléthon | Avancées dans la Maladie de Steinert – DM1 | Click Here | June 2024 |
| Report | AFM-Téléthon | Avancées dans la Maladie de Steinert – DM2 | Click Here | June 2024 |
| Newsletter | AFM-Téléthon | AFM DM Newsletter. The latest issue and all previous issues are available on the page. | Click Here | Ongoing |
English
| RESOURCE | EDITOR | DESCRIPTION | LINK | DATE |
| Documentation | U.S. guidelines and recommendations as published by Myotonic Dystrophy Foundation | Click Here | ||
| Database | WHO | World Health Organisation International Clinical Trials Registry Platform. Includes trials from many registries around the world, including clinicaltrials.gov | Click Here | Ongoing |
| Database | US Nat Library of Medicine | Clinical Trials.gov – US National Library of Medicine database. | Click Here | Ongoing |
Other languages
| RESOURCE | EDITOR | DESCRIPTION | LANGUAGE | LINK | DATE |
| A unique Online Public Access Catalogue on Neuromuscular Rare Diseases, updated daily, including more than 6 000 documents (in January 2025) related to Myotonic dystrophies (search for “myotonic dystrophy”). | Multilanguage | Click here | |||
| Documentation | Myobase documentation portal dedicated to neuromuscular disorders. | Multilanguage | Click here | ||
| Report | Spanish Healthcare | Comprehensive guide to DM1 diagnosis and follow-up care (Link on page to English version) | Spanish English | Spanish English | January 2019 |
| Research Information | Euro-DyMA | ReCognitION is an international project to discover novel drugs for the treatment of DM based on the results of the OPTIMISTIC study. Here are links to more information in several languages. | English Italian Danish French German Dutch | English Italian German French Greek Dutch | 2022 |
| Resources | Myotonic | Comprehensive Guidelines, Recommendations, and Publications, including Consensus-Based Care Guidelines for Myotonic Dystrophy Types 1 & 2 | Various | Click Here | Ongoing |
| MyoBase | AFM-Téléthon | A unique Online Public Access Catalogue on Neuromuscular Rare Diseases, including more than 3500 documents related to Myotonic dystrophies (“myotonic dystrophy” in search) | Various | Click Here | Ongoing |
Explore European support services for Myotonic Dystrophy. Connect with experts to access resources today!
Address
Myology Institut
47-83 Bd de l’Hôpital,
75013 Paris, France
Contact
E-Mail: info@euro-dyma.eu
Autres liens
© 2024 Federation of European Myotonic Dystrophy Associations