Patient and Parent Support Attend our FREE Information Days DUCHENNE PARENT & CAREGIVER INFORMATION DAYS These days focus on giving parents and caregivers updates on DMD research, clinical trials and the new Standards of Care for DMD, to make sure you have the most up to date information on caring for your child. We unfortunately had to postpone our next Patient Information Day due to take place in London on Saturday 14th March 2020 We are planning to host an event later in the year, so please check back or follow our Facebook and Twitter for further updates. Our information days are for parents and caregivers to get updates on DMD research, clinical trials and care considerations for DMD, to make sure you have the most up to date information on caring for your child. There will also be lots of opportunity to meet other parents. Feedback from our information days: "I came here to learn about the latest research about DMD, and not only did I get that, I learned about entrepreneurship, passion and making an impact. This is a different type of charity!" "I thought the entire day was perfectly paced, incredibly informative and I’m very glad I came. I’ve learnt a lot. I’ve only been part of this community for a few weeks but this day has inspired me to fight as fiercely as you guys fight. Thank you for all you do for our boys." About Our Previous Patient Information Days: September 2019, Manchester We hosted our fifth free information day in Manchester. View the full feedback document here. You can view some photos here. Here are the presentation slides from the day: Session 1: Newly diagnosed introduction Session 2: Introduction and lessons learnt Session 3.1: Gene therapy overview Session 3.2: Gene therapy company update: SOLID BIOSCIENCES: Carl Morris, Chief Scientific Officer SAREPTA: Lorna Hill - Medical Science Liaison, EU Session 4: Devices – Solid Suit update & Q&A SOLID BIOSCIENCES: Carl Morris, Chief Scientific Officer TO BE UPLOADED SOON Session 5: Steroid alternatives: Vamorolone Edasalonexent Program Session 6: Physiotherapy and hydrotherapy Session 7: Accelerating drug development: DMD Hub Project HERCULES DMD Hub March 2019, Guy’s Hospital in London: We hosted our fourth Information Day in London in March. View the agenda here. View the Feedback Survey Results here. September 2018, John Walton Muscular Dystrophy Research Centre in Newcastle: We hosted our third FREE Parent and Caregiver Information Day, in Newcastle in September. Read about it here. View the Agenda. The day focused on giving parents and caregivers an update on the new Standards of Care guidelines for Duchenne muscular dystrophy. There were also updates on DMD research and clinical trials. Please read the feedback here. Our speakers have kindly given us permission to share the presentations from the day. Please find links to the presentations below: David Bull: Turning a Compound into a Medicine Dr Michela Guglieri: An update on the new Standards of Care Guidelines Dr Jarod Wong: Update on Endocrine and Bone Standards of Care Dr Anna Mayhew: Physiotherapy update Prof Volker Straub: Gene therapy and CRISPR February 2018: UCL Great Ormond Street Institute of Child Health Information Day: Duchenne UK hosted its second FREE Patient Information Day on Friday 23rd February 2018, at UCL Great Ormond Street Institute of Child Health in London This event was primarily aimed at educating parents and caregivers about: • How their child with Duchenne could participate in clinical trials • Current ongoing clinical trials • Opportunities to take part in trials that are or will be recruiting in the near future. There was also an opportunity to receive the latest care updates, and learn more about supporting the learning and education of children and adults living with Duchenne muscular dystrophy. CLICK HERE to watch Emily Crossley's opening speech. CLICK HERE to view the slides from Session 3 entitled: "Current clinical trials and research overview followed by a Q&A". We would like to thank all those who presented and attended the day. We are especially grateful to everyone who completed the feedback forms, CLICK HERE to view our feedback survey. July 2017: Alder Hey Information Day: In July 2017 we invited patients and caregivers to a free information day at Alder Hey Children's Hospital, to share with them some of the trials we've funded, update them on the work we are doing, and to give advice and information about how to access research and clinical trials of potential treatments for Duchenne Muscular Dystrophy. The sessions were focussed on what clinical trials are coming up in the UK in the next 12 months, and how patients can access them. We've created a presentation with all this information on it which you can VIEW HERE.There were also updates on care and supporting the learning and education of children and adults living with Duchenne Muscular dystrophy..It was wonderful for us to see so many of our community gather together and support the event. We were delighted with the feedback from the day, which you can read here by CLICKING HERE. Duchenne UK is entirely reliant on donations to fund and accelerate the search for treatments for DMD Please help us and donate today: Direct Debit – Duchenne Direct Individual Donation – Donate If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds Take part in one of our fundraising events – Events Text DUCH10 £10 to 70070 THANK YOU FOR YOUR SUPPORT