Standards of care for DM1
Myotonic dystrophy type 1 (DM1) represents the most common form of muscular dystrophy in adulthood. DM1 affects between 1 in 3,000 and 8,000 individuals globally and has an estimated prevalence in Europe of 10 to 12: 100,000. The variability of this disease has been a challenge for treatment development and research. There is currently no casual therapy for this condition and symptomatic treatment may not always be satisfactory or inconsistent. There are yet no global standards of care established for DM1 however in 2018 The Myotonic Dystrophy Foundation (MDF) announced the publication of the first-ever Consensus-based Care Recommendations for adults with DM1. These guidelines are the result of a collaborative work involving 66 international and highly experienced clinicians and aims to standardised and improve care for people living with DM1 around the world.
The MDF Toolkit for patients was produced by the MDF and includes valuable information to educate and support individuals with Myotonic Dystrophy and their families. This tool kit is available in four different languages (English, French, German and Spanish) and hard copies can be downloaded or requested directly through the MDF page.