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 serie
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 be joined by Dr David Schonfeld, renowned paediatrician and child development expert with over three decades of experience supporting people through trauma, grief, and crisis to 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.
Unlocking Wheelchair Access
Date: Wednesday 15th July
Time: 6:00-7:00pm
In recognition of the Global Day of Inclusion, we are hosting a webinar with double gold medal winning Paralympian, Mental Health Practitioner and Disability Sports Coach Rachel Morris on navigating the wheelchair access system can feel overwhelming, especially when trying to understand the options available for you or your child. Join us for this informative webinar, where we’ll provide an overview of the NHS wheelchair service pathway and introduce active wheelchairs, helping you make informed decisions about mobility and independence.
Navigating Diagnosis and Grieving the Life Imagined: Part 1: Grieving the Life You Imagined and Finding Meaning in a New Reality
Date: Wednesday 19th August
Time: 6:00-7:00pm
Part 1 of this two-part series invites families to acknowledge and name the losses that come with a Duchenne diagnosis — not just practical ones, but the imagined future that must now be reimagined. We’ll explore how to talk with your child and their siblings, and offer strategies to build emotional resilience, cultivate meaning, and navigate the difficult transitions that lie ahead.
Navigating Diagnosis and Grieving the Life Imagined: Part 2: Coping with a Duchenne Diagnosis and Understanding the Emotional Landscape
Date: Wednesday 26th August
Time: 6:00-7:00pm
Part 2 of this two-part series focuses on the emotional experience of receiving a Duchenne diagnosis. We’ll explore early emotional responses, the concept of ambiguous loss, and the ongoing nature of grief that many families experience. The session offers practical coping strategies, communication approaches, and guidance on building a support network — at a pace that works for you.
Missed it? No problem! All of our webinars so far have been recorded and are available to watch here.
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.
- 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.
Find out more about our ongoing work, in-person events and how you can get involved in our monthly newsletter.
We can support you and your family wherever you are in your journey. If you’d like one of our Support Team to contact you, let us know here and we will be in touch. You can also find out more about our monthly support groups and our group counselling programme.
