Webinar Series 2026
A Duchenne diagnosis means navigating complexity everyday: medical, emotional, educational, practical and social. Too often, families are expected to find answers alone, to navigate systems without guidance and to carry emotional weight in silence.
The Action Duchenne Webinar Series 2026 exists to change that. This programme will bring together expert insights, lived experience and compassionate facilitation to address the issues that matter most to the Duchenne community. We have intentionally timed each webinar to align with national awareness moments to turn awareness into meaningful support and action. It is a space for clarity, validation and connection.
Across 2026, we will explore the full reality of Duchenne, from diagnosis and education to mental health, caring, identity, grief and future planning. Every session is designed to offer:
- Clear reliable information you can trust
- Practical take-home guidance you can apply immediately
- Emotionally safe conversations that acknowledge lived experience
- Inclusive spaces where every opinion is respected
Our approach is simple. No false hope. No minimising reality. No one-size-fits-all answers.
Duchenne has changed, but understanding has not always kept pace. Families are living longer with complexity, navigating evolving care, education systems and emotional realities that are rarely addressed together. This series responds to that gap, offering conversations that will equip you to live your life fully and thrive. We recognise that awareness without action and support without understanding are not enough. This series brings both.
The Action Duchenne Webinar Series 2026 is designed for:
- Parents and carers at every stage of the journey
- Siblings and friends
- Bereaved parents and families
- Educators, heath care professionals and support workers
- Anyone committed to understand Duchenne with honesty and respect.
You do not need to have all the answers. You do not need to be ‘coping well’. You just need to come as you are. Together, we can build understanding that is accurate, compassionate and rooted in real life, for the Duchenne community, by the Duchenne community.
All webinars are free to attend and open to all Duchenne communities. We look forward to welcoming you.
Real Conversations. Trusted Knowledge. Community at the centre.
Once registered you will receive confirmation and joining details, reminder emails before each session and a follow up email after the webinar. If you have any questions about the series or need support with registration, please contact : info@actionduchenne.org
Register for the next Webinars in our 2026 series
Duchenne and the Brain: Why Mental Health, Cognition and Neurodiversity Matters
Date: Wednesday 13th May
Time: 6:00-7:00pm
This Mental Health Awareness Month, we’re looking beyond the muscles to understand how dystrophin shapes cognition, behaviour and neurodiversity. Professor Francesco Muntoni will join us to explore the often-overlooked neurological side of Duchenne. From dystrophin’s role in the brain to the latest findings from the BIND2 study, this session unpacks what specific dystrophin isoforms mean for learning, cognition, and neurodiversity — because DMD is so much more than a muscle condition.
Carer Identity and Sustainability
Date: Tuesday 9th June
Time: 6:00-7:00pm
Join us during Carer’s Week as we focus on how you hold onto your identity and find balance with your role as a parent carer. Relationship counsellor Mark and Outreach Support Officer Kelly will talk about the issues facing carers, including addressing and avoiding burnout. identity loss and isolation, self-care and support networks.
Don’t miss this important session aimed to address the real issues in the day to day lives of those in our community.
Hospice and Palliative Care in Duchenne: What it really means?
Date: Tuesday 23rd June
Time: 6:00-7:00pm
Honouring Children’s Hospice Week, this webinar challenges common misconceptions around hospice and palliative care in Duchenne. Far from signalling the end, these services are designed to support the whole family – physically, emotionally, and practically.
Join us to explore how this kind of care can enhance quality of life and what it really means to access it.
Grief & Bereavement
Date: Tuesday 7th July
Time: 6:00-7:00pm
In support of National Bereaved Parents Day, this sensitive and compassionate session is designed for families navigating bereavement after the loss of a child with Duchenne. We’ll explore how to cope with grief, how to support surviving siblings through their own experience of loss, and how to find meaningful ways to honour and preserve the legacy of your child.
Upcoming Webinars:
Please note that the specific timings, speakers and session formats will be confirmed closer to each event and may be subject to change depending on speaker availability, emerging community needs and programme development. Any updates will be communicated promptly via our website, email communications and social media channels to ensure participants have the most accurate and up-to-date information
Make sure you don’t miss any of the webinars in the series. Register your interest below and we’ll make sure you’re kept informed about dates, speakers and registration details.
- Women’s Health, Carriers and the Impact of Duchenne: We’ll join with the International Day of Action for Women’s Health with a focus on the health and wellbeing of carriers, looking at symptom management and care guidance.
- Accessible Sports/PE and Activities: Marking the Global Day of Inclusion, we will focus on unlocking play with adaptive sports and active living.
- Navigating Diagnosis and Grieving the Life Imagined: During National Wellness Month, our webinar will navigate the complexities of coping with a Duchenne diagnosis, understanding the emotional landscape and finding meaning in a new reality.
- Understanding Duchenne Today: Join us on World Duchenne Awareness Day 2026 for a webinar explaining what Duchenne is and its genetic cause.
- Education and Learning: Understanding, Inclusion and Impact: We’ll celebrate our teachers on World Teacher’s Day by looking at navigating the school system.
- Planning Ahead: Transitions and Future Care: On World Palliative Care Day, our webinar will focus on planning for the future, transitions to adult services and challenging fear and stigma.
