The year 2019 has started, and we are counting last year’s successes and losses. The losses are painful: too many fantastic and brave young men died too early, making us constantly aware of how much work is still ahead of us. The dire need to share information about optimal and updated care at all levels, amongst clinicians, families and not in the last place the boys themselves. The need to promote Duchenne and Becker research and support the development of tools to improve how clinical trials are conducted. The need to make sure all patients have access to new drugs and treatments.
In 2018 we have been successfully focusing on: various topics, including:
- Implementing the updated standards of care, including family guides and explanimations.
- Taking a strong position on the importance of care and making this the theme for World Duchenne Awareness Day.
- Starting new initiatives and collaborations regarding nutrition, bone health and other fields needing more research.
- Involving in drug development, for example in Vision-DMD and played our role in discussions concerning regulatory issues.
Thanks to our partnership with Duchenne Data Foundation, the Duchenne Community Advisory Board successfully started with 2 meetings already taking place in 2018. The Duchenne Patient Academy facilitated the exchange of information about fundraising and lobbying activities among member organizations. We are helping pave the roads to better data and knowledge capturing in being partners in Share4Rare and Duchenne Map.
The past year has also been a year of changes. After years of operating under UPPMD, we decided to continue from January 1stas the World Duchenne Organization.
In this year, we will continue to grow and devote ourselves on raising awareness for DMD and increasing WDO’s presence and visibility, and enhance relationships and extend influence in policy making and industry. With the power of the global Duchenne community, we will work together on reaching shared goals and increase the mutual opportunities and benefits for all of us.
The first meeting for WDO member organizations will take place on February 15, preceding the annual Rome Conference organized by the Italian Parent Project.
We are ready for 2019, full of opportunities to take new steps and create a brighter future for DMD & Becker!
Chair, World Duchenne Organization