November 10, 2023 by Florence Boulton
Welcome to the Annual Action duch*enne International Conference 2023
On behalf of the whole team at Action duch*enne, I would like to give you the warmest of welcomes
to this year’s International Conference. Our theme is Educating, Supporting and Empowering.
Thank you for making the time to be with us for the next two days; it is wonderful for us to have
such a large gathering of our duch*enne community.
This weekend, we welcome families from the UK, Ireland, Belgium, Netherlands, Cyprus, Italy, USA,
United Arab Emirates, Australia and Pakistan. There will be much to learn and to share between
families, colleagues from the different nations. From its first conference in 2002 at Imperial College, London, Action duch*enne has always brought together families, clinicians, therapists, researchers and pharmaceutical companies from across the world.
We have 3 streams running over the 2 days. 26 sessions including 2 sessions of Q&A with Clinicians
and Pharmas respectively. We have a number of sessions that are peer led, sharing experiences of
living with duch*enne and parent/caregiver perspectives. I hope you all enjoy meeting each other, gain empowering knowledge and make lasting friendships and supportive connections.
For clinicians, researchers and academics, I hope our conference will provide you a perfect
opportunity to network, discuss the latest research findings and to share expertise in optimal
standards of care.
For treatment manufacturers and providers, I hope our conference will provide you with the
opportunity to meet colleagues from other companies and my team and discuss our common desire
to accelerate effective treatments to patients, and to share best practices.
I would like to extend my sincere gratitude to our speakers. Thank you so much for all your effort in
joining us this weekend and sharing your invaluable insights on support.
Action duch*enne has a clear vision: a world where lives are no longer limited by duch*enne muscular
dystrophy. We are a community-led charity, putting families in the lead to meet their needs. This conference is a vital part of removing those limits. At Action duch*enne, we have listened to our community when you said you wanted us to focus on helping families to live with the condition while continuing the search for a cure. Over the last four years, we have focused on delivering meaningful and much-needed frontline support, education and research projects to patients and families. Action duch*enne aims to support every young person, adult and family throughout their duch*enne journey. We call this ‘All-through Support’.
As an organisation, we pride ourselves on taking an evidence-based approach. Our ‘All-through
Support’ programme is mapped out with members of our community and tested in small scale
pilots. What we learn from those pilots helps us decide whether a project is feasible and should be
scaled up.
In 2023 we supported 1,286 families through our direct bespoke support in the form of virtual
meetings, 1:1 support calls and messaging. This was up 18% from 2022.
There are approximately 120 cases of duch*enne diagnosed in the UK each year. In 2023, we received
32 new registrations via our UK DMD Registry, and 28 via our 2023 Science on Tour workshops. We
offered support to ALL these new patients and families: including counselling and information on Clinical trials and how to access them. Requests for financial support. International families are directed to registries in their own countries (TREAT-NMD registries).
We have delivered 30 science education workshops across the UK and Ireland which covered 95% of the postcodes where individuals we support live.
48 bitesize science video recordings have been completed and will be available to all in December.
We hosted 21 group support meetings (this is equivalent to 2 HIVE sessions per month).
We established 17 peer-to-peer support groups to ensure people can access support in a way that
meets their needs.
We delivered 6 in person training sessions to teachers and assembly talks in local schools to raise
awareness of duch*enne aimed at the children as well as staff. We created 1 new supporting schools webpage and 1 new end-of-life and bereavement support with resources.
Since our formation in 2001, Action duch*enne has invested more than £13m in scientific research,
education programmes, working with more than 15 organisations to fund research across 4
continents.
As a resourceful small charity, all our staff are involved in supporting families and have played a huge
role in delivering our projects. The team here at Action duch*enne works alongside a team of amazing volunteers. Last year, 186
volunteers, fundraisers and supporters donated more than 1560 hours of their time.
I would also like to extend my gratitude and welcome to our sponsors, supporters and exhibitors.
Thank you for your unwavering support to Action duch*enne, the longest serving duch*enne-only
charity in the United Kingdom.
Thank you for making this conference possible.
