Care Guidelines for Becker muscular dystrophy now available
On September 14, the Becker Care Guidelines for the Clinical Management of Becker Muscular Dystrophy (BMD) were officially presented at the TREAT-NMD Becker Education and Engagement Day in Milan en Amsterdam in multiple languages. These guidelines are a major milestone. They represent the first clinical management tool specifically designed for patients and families affected by BMD.
Care guidelines for Becker patients and families
These guidelines were created in response to a strong need expressed by the BMD patient community. Initiated in 2021 by Parent Project aps, the guidelines were developed with contributions from a broad team of specialists in BMD care and led by Prof. Elena Pegoraro from the University of Padua’s Department of Neuroscience. The comprehensive document Diagnosis and Management of Becker Muscular Dystrophy: A Guide for Families is now available online.
Care Guidelines for BMD patients and families
The guidelines cover essential aspects of BMD management, addressing clinical treatment as well as psychological and social support needs. Recently, the guide has also been translated into English, making this resource available to an international audience. The initiative was carried out in collaboration with TREAT-NMD.
Becker Care Guidelines translations
The Becker Care Guidelines are available for download in English, Dutch, French, German, Italian and Spanish.
Why BMD specific guidelines matter
Historically, Becker muscular dystrophy and Duchenne muscular dystrophy (DMD) were managed with similar clinical approaches due to having many shared characteristics. However, BMD progresses more gradually and has different needs that benefit from a different approach. With growing advancements in therapeutic options, it is becoming more important to have guidelines that address the unique needs of people living with BMD specifically.
In the guideline’s introduction, Antonio Bellon of Parent Project aps underscores the importance of timely diagnosis and preserving muscle strength. While no cure currently exists for BMD, available therapies can significantly improve quality of life, and research continues to advance. These guidelines offer BMD patients and families a reliable, understandable tool for navigating the complexities of the condition and emerging treatments.
A message from Parent Project aps’ President
Ezio Magnano, President of Parent Project APS, shared: “Three years ago we created an important reference tool for Becker patients, the first in the world. Today it is a great satisfaction to be able to share the English version, to make it available to many patients and families all over the world. A big thank you goes, once again, to all the people who contributed to achieving this precious goal”
The English translation was made possible with the support of Edgewise Therapeutics and Santhera Pharmaceuticals.
We express our gratitude to Duchenne Parent Project aps for initiating this project and allowing the World Duchenne Organization to share the materials on our website.
