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About Us

The UK has an excellent reputation for high quality FSHD clinical services, research teams and the established UK FSHD Patient Registry. These accomplished UK centres were mainly working in their own areas without an overarching strategy or central co-ordination. There was no single group focused strategically on FSHD. The UK had missed important opportunities for clinical trials in 2020. There was a gap in making things happen for FSHD in the UK.

How We Began

FSHD UK was set up in July 2021 by Rajeshri Badiani with the aim of expediting clinical trials for patients in the UK. It has since become the recognized group for coordinating such FSHD activities in the UK.

Where We Are Today

We have become a strong multi-stakeholder network and have had a huge success in fast-tracking FSHD activities in the UK. In December 2023 we formed a registered charity to continue to deliver on our vision and aims.

Previous Plans and Achievements

What Can Be Done?

You can’t prevent FSHD, but there are many things you can do for your health. There are medical professionals to guide you, but many do not know about FSHD, so you will have to find professionals who are willing to help.

 

  • A neurologist diagnoses your condition and checks on the progression of symptoms.
  • A genetic counselor advises about genetic testing.
  • A physical therapist develops exercises to help with muscle function and pain.
  • An occupational therapist finds ways to make it easier for you to get around your home, do daily activities and work.
  • A dietician advises you about eating healthy foods.
  • An orthotist can fit you with a brace to reduce trips and falls.
  • A pulmonologist checks your breathing.
  • A mental health counselor helps you cope with stress, depression, and anxiety, and achieve well-being.
  • 70-80% of people with FSHD report pain; exercise massage, acupuncture, mindfulness training, and pain medication can help.

    FSHD Day

    FSHD Day is a day when patients, carers and the community can bring awareness to the wider public about FSHD related information. It is a time for everyone to celebrate and bring awareness to the masses.
    Join us on World FSHD Day each June 20th. We look forward to celebrating this with you.