This stage or thinking about this stage is hard to navigate alone.
We are here to help Duchenne families navigate their journey, and we are here for you now.
Please email info@actionduchenne.org or call 07535 498 506 and one of our support team will get back to you.
Other useful sources
You may find this video from Muscular Dystrophy UK useful. Professor Derek Willis, Adult Palliative Care Physician and Medical Director of Severn Hospice discusses symptom control, providing spaces in adult hospices, advance care planning and end of life care.
NHS.uk has some useful information about End of Life care www.nhs.uk/conditions/end-of-life-care/
We also have regular contact with Beyond.. our knowledgeable companion for everything after life. They have useful and easy to digest information on things like writing a will, lasting power of attorney, arranging a funeral, funeral costs and admin and legal issues. Take a look at their help centre beyond.life/help-centre/. You can also call them on 0800 054 9542
