FSHD UK was founded in 2021 by Rajeshri Badiani (FSHD patient, founder, chair, trustee of FSHD UK) to focus on bringing clinical trials to the UK. By setting up a network of dedicated FSHD clinicians & research scientists, raising awareness of FSHD in the UK and internationally. Together we have succeeded in bringing clinical trials and natural history studies to the UK.

Whether you are newly diagnosed with FSHD or seeking more information, join our journey and help us to elevate the FSHD agenda for our community.

Map of FSHD Clinicians / Sites part of the FSHD UK group

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What is fshd?

Facioscapulohumeral muscular dystrophy (FSHD) is a disorder characterized by muscle weakness and wasting (atrophy). The condition gets its name from the muscles most commonly affected:

  • face (facio)
  • shoulder blades (scapulo)
  • upper arms (humeral)

Some of the symptoms are shown in the diagram provided. For a fuller understanding, please refer to the FSHD Society link below.

Image courtesy of the FSHD Society.

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