What we do
Myositis UK seeks to improve the diagnosis, treatment, understanding and prognosis of myositis. We do this by providing information, relieving isolation, raising funds, and funding research.
What we do
Providing information
We provide information to those diagnosed with myositis and their families to help them understand these rare diseases and the help that is available. We do this through our website, newsletter, guides, and publications – including our Teddy-Bo book aimed specifically at children.
Relieving isolation
We provide opportunities for those affected by myositis to engage with others both online and face-to-face, relieving the isolation that is often felt when diagnosed with a rare disease. We do this by offering free UK membership, organising events, running a closed Facebook group, and our online community zone.
Raising funds
We do not receive any funding from the government, National Lottery, or pharmaceutical grants. We rely on donations and fundraising to sustain the charity and fund vital research. We actively fundraise through draws, merchandise, and challenge events, of which the London Marathon is our biggest fundraiser.
Funding research
We fund vital research into all the different myositis diseases. Despite being a small charity, we have raised over £700,000 for research both in the UK and overseas. We also participate in medical meetings and seminars.