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 first webinar in our 2026 series!
Women’s Health: Genetics and Decisions
DATE: 9th March 2026
TIME: 6-7pm
We’re celebrating International Women’s Day 2026 with a spotlight on the often overlooked needs of Duchenne carriers. We’re excited to be joined by Uruj Anjum, the founder of Saiyna Therapy, an online psychotherapy practice supporting individuals and couples navigating genetic diagnoses, inherited conditions, loss, and perinatal mental health.
Uruj is an Attachment-Based Psychotherapist and former NHS Genetic Counsellor, with over 13 years of clinical experience supporting clients facing uncertainty, complex reproductive decisions, and the emotional impact of inherited conditions. Her work integrates genetic understanding with psychological care, offering a compassionate space to explore identity, guilt, grief, and well-being.
This webinar will equip and empower women with knowledge and validation. Register now to book your place.
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.
- Neurodiversity, Learning Difference and Duchenne: Join us for Neurodiversity Celebration Week from 17th – 23rd March with a webinar focussed on how Duchenne impacts learning and behaviour.
- Movement That Works: Physiotherapy, Sports and Duchenne: We’ll be celebrating the International Day of Sports for Development and Peace, looking at safe movement, physical activity and accessible and inclusive sports.
- Supporting Siblings of Children with Duchenne: To mark Siblings Day, our webinar will explore the wellbeing of Duchenne siblings and family balance.
- Duchenne and the Brain: Why Mental Health, Cognition and Neurodiversity Matters: During Mental Health Awareness Month, our focus will be on the impact Duchenne has on the brain.
- 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.
- Carer Identity and Sustainability: Honouring our amazing carers during Carer’s Week, our webinar will explore the emotional wellbeing of Duchenne parents and carers.
- Hospice and Pallative Care in Duchenne: What it Really Means: During Children’s Hospice Week, this webinar will aim to reframe the hospice and palliative care perceptiion.
- Grief and Bereavement: Joining with National Bereaved Parent’s Day, our webinar on grief and loss will allow discussion on how to navigate life after loss.
- 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.
