On Rare Disease Day, watch Eli Crossley, son of our friend and Duchenne UK co-founder Emily, as he talks about – and demonstrates – the amazing technological developments that are being trialled for children with Duchenne muscular dystrophy. The ‘smart...
We are pleased to share that Solid Biosciences has completed its acquisition of gene therapy company AavantiBio, to create a genetic medicine company focused on neuromuscular and cardiac rare disease, with a continued, strong focus on Duchenne. At this pivotal moment...
DMD Care UK’s new cardiac care recommendations have been published in the BMJ Open Heart journal. All Duchenne parents and caregivers are being urged to read the new guidance and share with their networks, as protecting the heart early is crucial to preventing...
Solid Biosciences has announced its entry into a definitive merger agreement to acquire AavantiBio, to create a genetic medicines company focused on neuromuscular and cardiac rare diseases, maintaining a strong focus on Duchenne. In a letter to the Duchenne community,...
Dedicated specialist support for Duchenne muscular dystrophy (DMD) patients and families’ mental health and wellbeing will soon be more readily available, as part of the DMD Care UK project. DMD Care UK is a nationwide initiative aiming to ensure that every person...
The DMD Hub is launching the Central Recritment Pilot Project, aiming to create a database of families interested in take part in clinical trials. On Thursday 31st March 2022, 7-8pm, Dr Michela Guglieri (Consultant Neurologist at Newcastle University and Newcastle...
An ‘In Case of Emergency’ app has been launched for Duchenne patients and their families, as part of the DMD Care UK project spearheaded by Duchenne UK and the University of Newcastle. The Duchenne Research Fund is proud to be a funder and supporter of DMD...
We are delighted to report the outcomes of our grant for a Clinical Trials Lectureship. The grant, which was supported by a consortium of seven UK charities, saw the Duchenne Research Fund joined by Action Duchenne, Alex’s Wish, Duchenne Now, Duchenne UK, Harrison’s...
The Duchenne Research Fund are pleased to announce that the University of Newcastle is now recruiting for a clinical psychologist to work with Duchenne patients and their families as part of the DMD Care UK Psychosocial Programme. This clinical and research-based role...
The Duchenne Research Fund is delighted to announce that we are awarding a £640,000 grant to fund vital psychosocial care and research as part of Duchenne UK’s DMD Care UK programme. We are so pleased to partner with Duchenne UK on this important project. The...
