Duchenne Now

JOIN US TO #DuchenneDashATHOME Pledge how many kilometres you’ll aim to complete for the Duchenne Dash AT HOME, finishing on Saturday 13th of June - when the Dash should have arrive in Paris! Register here: dashathome.duchenneuk.org

We pleased to share with you the draft agenda for our next FREE patient information day. There will be updates from companies on DMD research and clinical trials and sessions on care and education. Register now to secure your space: duchenneuk.org/pid-registrati…

Vamorolone Phase 2b (VISION-DMD): Now recruiting at Great Ormond Street Hospital and Birmingham Heartlands Hospital. The Vamorolone Phase 2b (VISION-DMD) clinical trial is open for recruitment at 6 UK hospitals.... facebook.com/DuchenneNow/po…

Duchenne UK have teamed up with Whizz-Kidz, Samantha Renke, Miss Jacqui, The University of Edinburgh and People's Postcode Lottery to launch the #DreamWheelchair competition! What would your dream wheelchair be... facebook.com/DuchenneNow/po…

JOIN THE DMD Hub: dmdhub.org/join-the-hub/ Stay informed about the latest DMD clinical trials and keep up-to-date with the latest news from the DMD Hub. dmdhub.org/join-the-hub/

Duchenne UK invests £228,562 to address the use of testosterone as a treatment for Duchenne Muscular Dystrophy We are pleased to see that Duchenne UK is funding the extension study to the testosterone trial which... facebook.com/DuchenneNow/po…

Yesterday all those who have JOINED THE HUB were emailed to inform them that the PolarisDMD Phase 3 clinical trial for edasalonexent is now recruiting in the UK at Bristol Royal Hospital for Children. Plans are also... facebook.com/DuchenneNow/po…

Solid Biosciences, Sarepta and Pfizer to present at Duchenne UK Patient Information Day THIS SATURDAY. Some final places are available but you need to register by 10am tomorrow - Wednesday 12th of March. Register here: dukday.eventbrite.com facebook.com/DuchenneNow/po…

Ever seen Owen Farrell hook his fingers together after a successful kick at goal? ...it's in support of Duchenne UK and Joining Jack to help raise awareness for DMD. facebook.com/DuchenneNow/po…

Save Our Sons Duchenne Foundation in Australia have published their first paper in Neuromuscular Disorders looking at standing wheelchairs and how they promote independence, health and community involvement in... facebook.com/DuchenneNow/po…

Duchenne UK launch new resource for DMD Community to mark #RareDiseaseDay. The theme for Rare Disease Day 2019 is 'Bridging health and social care'. The folder is a new resource for the DMD community to help to... facebook.com/DuchenneNow/po…

DUCHENNE PARENT & CAREGIVER INFORMATION DAYS These days focus on giving parents and caregivers updates on DMD research, clinical trials and care guidelines to make sure you have the most up to date information on... facebook.com/DuchenneNow/po…

We need YOUR help to fund promising research. Visit Duchenne UK's website to find out how you can help: duchenneuk.org/how-you-can-he… facebook.com/DuchenneNow/po…

Yesterday Alex Johnson, Emma Heslop And Tony Levene met with the team at Royal Manchester Children's Hospital to discuss how the DMD Hub can help support them running more clinical trials. Read more about the... facebook.com/DuchenneNow/po…

Santhera want to reassure the community about the supply of Raxone (idebenone) for patients enrolled in the Early Access to Medicine Scheme (EAMS) and/or the SIDEROS study following #Brexit Email us with any Qs: info@duchenneuk.org facebook.com/DuchenneNow/po…

Duchenne UK grants £20,000 to develop an adult Neuromuscular Complex Care Centre in the North East duchenneuk.org/news/adult-nmc… facebook.com/DuchenneNow/po…

Last night representatives from Duchenne UK and partners of Project HERCULES attended the EURORDIS - European Rare Diseases Organisation Black Pearl Awards Ceremony. Project HERCULES was awarded the prestigious... facebook.com/DuchenneNow/po…

We are excited to announce our major new fundraising event of 2019 - one which you can take part in as a team or individually. It’s the Season Finale triathlon at the iconic olympic venue, Eton... facebook.com/story.php?stor…

The Vamorolone Phase 2b (VISION-DMD) clinical trial has begun recruitment in the UK at Newcastle and Glasgow. dmdhub.org/trials/vamorol… facebook.com/DuchenneNow/po…

Patient and parent involvement is at the heart of everything we do. Duchenne UK is run by parents, fighting every day to speed up treatments for all. Our Family and Friends Funds provide vital support to Duchenne... facebook.com/DuchenneNow/po…