Patient Engagement Network

As part of our Patient engagement strategy our aim is to inform and update the FSHD patients/families and carers about FSHD, up and coming clinical trials as well as research into FSHD and in so doing create a mobilised informed FSHD community.

Some Patients have taken on the leadership role at their hospital sites and this has been the start of a voluntary working group since 2021. The Patient Engagement @ Site gatherings aim to create a group of patient leads who will connect up to share ideas and information across the network.

The main aims of this initiative are to:

“The last patient engagement session we organised in Shrewsbury was a great success, getting people together in an open and friendly atmosphere was brilliant. Having experts there to talk and present to the guests in a more relaxed fashion in contrast to a medical appointment led to some great questions and discussion points as well as useful information. Being able to speak and interact with the wider FSHD community was great too and I’m looking forward to the next one already!”

Richard Pulford, Patient Lead at RJAH

Get Involved

We currently have patient engagement leads at :

RJAH Oswestry
UCLH – London
The Queen Elizabeth Royal Hospital – Glasgow

We have vacant spots for the other sites in our group. If you would like to be involved or start a patient community group at your site (even if it is not involved in FSHD UK – we would welcome them to join us) please contact us by email or on our contact form.