Information Day 2018

Published Date
26/04/2018
Author
Joel Rackham
Category
Care & Support
pablo (83)

On Saturday 21 April, 180 people joined us at our information day in Cambridge to hear research updates and meet with others living with the same condition.

Research and clinical professionals focused their talks on limb girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, myotonic dystrophy, mitochondrial disease and Duchenne muscular dystrophy. Participants had opportunities to meet the speakers and ask questions too.

Always good to hear from the experts together with patients who raise the questions.

The whole day was very informative. The experts were so easy to listen to and made the information they imparted easy to comprehend.

Keynote speaker, Professor Patrick Chinnery from the University of Cambridge, gave an overview of an exciting research initiative set up by the National Institute for Health Research (NIHR). The NIHR BioResource brings together health data from over 100,000 patients, who volunteer to join it. University researchers, as well as those in industry and the NHS can then access and use this data for their research. Joining the BioResource also gives patients the opportunity to take part in relevant research studies and trials. If you have a muscle-wasting condition and would like to find out more, please visit the BioResource – Rare Disease website or email rarediseases@bioresource.nihr.ac.uk.

Dr Alessandra Ferlini came from the University of Ferrara in Italy to speak about the Nanodelivery of drugs in Duchenne muscular dystrophy. We created a Facebook live event for this, and you can still view the film on our Facebook page here.

Participants told us they enjoyed meeting others with the same condition and catching up with friends; there was great conversation both inside and outside of the talks.

Thank you, it was our first conference. Very informative and good to meet other people and hear up-to-date information.

A very useful and informative day. All staff members were extremely helpful across the day.

If you’d like to take part in similar events later in the year, you can sign up to our National or Scottish Conferences.

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