Patient information day, 24 March

Published Date
Joel Rackham
Care & Support

On Friday 24 March Muscular Dystrophy UK held an information day in London following the annual UK Neuromuscular Translational Research Conference. It was attended by specialists from across the UK and from the international research community. It was held for individuals and families living with facioscapulohumeral muscular dystrophy (FSHD), limb girdle muscular dystrophy, Duchenne muscular dystrophy, congenital muscular dystrophy and spinal muscular atrophy (SMA).

Attendees of the event said:

The information given on the day was so helpful, the best information I have received since my diagnosis ten years ago.

It was a very well run day, with very specialised speakers with great knowledge and very approachable. It was a great day, thank you.

Time flew while we were there. Great, articulate speakers who were very easy to talk to.

In the morning families heard about advances in genome editing from Dr Ronald Cohn, who joined us from Toronto. Attendees then separated to hear specific research updates in relation to their condition.

Following this, many clinical topics were discussed in the sessions focused on each of the five conditions including physiotherapy, respiratory care and surgery, all with an opportunity to ask questions to the expert speakers. There was also a lively buzz in the breaks as attendees chatted to each other and to the speakers.

If you have any questions or feedback about the day or are interested in receiving some of the information that was discussed then please do email or call our office on 0207 803 2800. We will be sending the presentations to everyone who booked to join us.

There are also future information days that may be scheduled, please check the events section of our website to find out more.

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