DMD Care UK explores next steps for patient care

On 29th February, Rare Disease Day, we were pleased to be part of the 2024 national meeting for DMD Care UK. More than 130 clinicians and 25 patient representatives are now involved in DMD Care UK, giving their time and expertise across no fewer than 13 working groups...

World Muscle Society awards 2023 DRF prize

The World Muscle Society has once again awarded the Duchenne Research Fund prize at the annual WMS international congress, supporting a talented researcher in the Duchenne arena. The winner at the 28th congress in Charleston, South Carolina, USA, in October 2023 was...

See the smart suit that is changing children’s lives

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...

Solid completes acquisition of AavantiBio

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...

Parents urged to read new cardiac recommendations for Duchenne

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...

DMD Hub launches Central Recruitment Pilot Project

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...