TREAT-NND is a global network connecting neuromuscular communities across the world. On Saturday 14th September 2024 with the support of patient organisations we connected the Becker muscular dystrophy (BMD) community from countries across Europe.
Living with BMD can be frustrating, challenging and isolating which is why building a support network of people who understand what you are going through is vital. We were honoured to provide this opportunity.
Hosting two Becker Education and Engagement Days on the same day in Amsterdam and Milan we brought together people living with Becker and their families, from the UK, the Netherlands, Italy, Spain, Germany, France and Belgium.
With instantaneous translations in English, Italian, Dutch, French, Spanish, and German, the Becker European community were able to learn about managing BMD from leading experts but also, meet in person, learn from, and support each other.
Expert speakers delivered sessions dedicated to the most up to date information on the importance of multidisciplinary care and genetic counselling, the psychological aspect of living with BMD, standards of care, transitioning from paediatric to adult services, as well as current and emerging therapies.
During networking breaks and the moderated discussion, Treat-NMD were humbled to watch connections being formed, listen to patients giving advice to each other, and graciously guiding parents of younger patients on how best to support their children. It was a safe space to share their personal individual journeys, how they have overcome challenges and adapted their dreams, and it was truly inspiring and exactly why TREAT-NMD wanted to host our first ever patient education and engagement events.
The TREAT-NMD Education and Events team would like to thank our partnering patient organisations, the speakers for creating an excellent programme, @Global Voices for facilitating the interpretations and most of all the patients and their families for joining us.
We hope to bring together the communities again in the future but in the meantime if you are living with Becker and are not already in touch with a patient organisation group please do connect with them, they do incredible jobs of connecting and supporting the BMD community.
Italy – Parent Project APS
Germany – Deutsche Gesellschaft für Muskelkranke e.V. (DMG)
Spain – Duchenne Parent Project España
Belgium – Duchenne Parent Project Belgium
France – AFM-Téléthon
Netherlands – World Duchenne Organization
UK – Muscular Dystrophy UK and BMD Hub
