On 7 September 2021, the World Duchenne Organization hosted an online event on Adult Life & Duchenne. The event gathered people from over 50 countries to listen to stories and experiences surrounding DMD and adult life. The World Duchenne Awareness Day 2021 event ‘Adult Life & Duchenne’ is available with Spanish, Russian and Ukrainian interpretation.
The aim of the online event was to inspire young adults with Duchenne and their families to think and plan for the future, and to call for global action to everyone involved to facilitate adults with Duchenne to live a full life.
Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.
Guideline for Duchenne Adult Care
In addition to the online event, a new Consensus Guideline for Duchenne Adult Care was published. This document concludes the insights of a series of workshops with specialists from a wide range of clinical areas. The Consensus Guideline for Duchenne Adult Care aims to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.
