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FSHD UK Charity

FSHD UK Charity is dedicated to supporting those affected by Facioscapulohumeral Muscular Dystrophy (FSHD) through advocacy, education, and research funding. They connect patients, families, and professionals to improve care and advance clinical trials.

FSHDUK Patient Engagement Day Scotland brings together people living with FSHD, families, clinicians, and researchers to share practical information, experiences, and updates on care and research. 🎗️ By registering, you&rsquo;ll help us plan meaningful sessions focused on real questions and everyday challenges, as well as current and future clinical trials in the UK. 🧬 Your voice matters in how FSHD UK supports, informs, and advocates for our community. Join us at the Ninewells Hospital, Dundee, &nbsp;alongside Dr Maria Farrugia (Neurologist), Dr Catherine McWilliam (Genetics Consultant) and &nbsp;Kirsten Patterson (Genetics Nurse) &nbsp;as well our Patient Engagement lead for Scotland - Alexandra Gardyne. Please note that this event is FREE to attend. Suitable for 18+. We cannot accommodate anyone under the age of 18 at this time owing to insurance restrictions.&nbsp; Registration from 12:30pm.

FSHDUK Patient Engagement Day Scotland

FSHD UK Patient Engagement Day 2027 Sponsored by Souffle Therapeutics Join us for a special day bringing together people affected by FSHD, their families and supporters to share experiences, exchange information and hear about developments in research and treatment. You must be 18 years or over to attend owing to our Insurance restrictions for the event. Venue: Leonardo Royal Hotel London St Paul&#39;sWe are delighted to be holding this event at the spectacular Leonardo Royal Hotel, right next to the iconic St Paul&#39;s Cathedral in central London.<a fr-original-style="" href="https://tours.headbox.com/tour/leonardo-hotels/fshd-uk-charity-conference-13-03-27-leonardo-royal-st-paul-s/036903ad-d517-4405-9c27-fdb4ee07eb9a" style="text-decoration-color: currentcolor; user-select: auto; box-sizing: inherit;" target="_blank">Take a virtual tour of the hotel</a> If you would like to book hotel accommodation, your email confirmation will give you a promotional discount code available to use for 12th/13th March. This event is sponsored by &nbsp;Souffle Therapeutics. &nbsp;<a fr-original-style="" href="https://www.souffletx.com/" style="text-decoration-color: currentcolor; user-select: auto; box-sizing: inherit;" target="_blank">https://www.souffletx.com/</a> whose representatives will talk about ongoing FSHD research and be available to answer questions from attendees. Refreshments and lunch includedRegistration includes morning and afternoon refreshments and a two-course lunch served in the hotel dining area. Early Registration tickets &ndash; just &pound;12.50!Places are limited as this is a catered event, so advance booking is essential.Once early registration places are booked, any remaining places will only be available at the full delegate rate of &pound;69.Book early to secure your place and take advantage of this special offer!

FSHD UK Charity

FSHD UK Charity

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FSHDUK Patient Engagement Day Scotland

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FSHDUK Patient Engagement Day Scotland

Get your tickets

FSHD UK Patient Engagement Day

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FSHD UK Charity