Patient care & support

Newcastle Information Day September 2018

On Saturday 22nd September 23 we hosted our third FREE Parent and Caregiver Information Day, in Newcastle.

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 from the day here.

We know that some people were unable to attend this meeting and for those who did attend, there was a lot of information to absorb. 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

Fleur Chandler: Health Technology Assessments and Project Hercules

We will be sharing the date for our spring 2019 patient information day soon.

Published on 22 September 2018

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