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. 

Following a successful day in London in February, our next event will be in Manchester, on Saturday 28th September 2019.

An agenda will be circulated soon, but please do register as soon as possible as numbers are limited: 

REGISTER HERE

    Feedback from our information day in February 2018:

    "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:

    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