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    • Attend our FREE Information Days
    1. 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 closely monitoring government guidance, with current COVID-19 restrictions, we are not able to plan further dates, but 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

    Published: 27th July, 2017

    Updated: 13th October, 2020

    Author: Nick Crossley

    Comments: 1

    Related topics:
    • Community Engagement and Support
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    DMD Hub

    DMD Hub

    Expanding Clinical trial capacity Read more

    Published: 1st March, 2015

    Updated: 26th June, 2019

    Author: Nick Crossley

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    Attend our FREE Information Days

    Attend our FREE Information Days

    Please join us at our free Patient Information Day Read more

    Published: 27th July, 2017

    Updated: 13th October, 2020

    Author: Nick Crossley

    Comments: 1

    Related topics:
    • Community Engagement and Support
    Impact Report 2020

    Impact Report 2020

    Despite the challenges of 2020, Duchenne UK has achieved much and we hope you find the impact report that we are releasing today, uplifting. Thank you for your support and we wish you a safe and bright 2021. Read more

    Published: 23rd December, 2020

    Updated: 27th January, 2021

    Author: Nick Crossley

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