Myositis UK

146 Newtown Road
Woolston
Southampton
SO19 9HR
United Kingdom
Telephone: 023 8044 9708
E-mail: [email protected]
Website: https://www.myositis.org.uk/

Supported Diseases

Amyopathic dermatomyositis

Synonyms: ADM, Dermatomyositis sine myositis

Antisynthetase syndrome

Synonyms: Anti-Jo1 syndrome, AS syndrome

Dermatomyositis

Synonyms: Adult dermatomyositis

Inclusion body myositis

Synonyms: IBM, Inflammatory myopathy, Sporadic inclusion body myositis

Juvenile dermatomyositis

Synonyms: JDM, Juvenile myositis, JPM

Juvenile polymyositis

Synonyms: Juvenile PM

Necrotizing autoimmune myopathy

Synonyms: Immune-mediated necrotizing myopathy, Anti-HMG-CoA myopathy, Anti-SRP myopathy, Autoimmune necrotizing myositis, IMNM, NAM, Immune myopathy with myocyte necrosis

Latest

Sexual and reproductive health support for vulnerable individuals and communities during COVID-19

1:1 telephone support is available for vulnerable people who are more at risk of poorer sexual health outcomes.
Coronavirus (COVID-19): guidance for people receiving direct payments

Changes to guidance for direct payment holders to reflect the latest PPE guidance from Public Health England, in particular what PPE should be worn during a time of sustained COVID-19 transmission. Also, questions have been added to the Q&A attachment on footwear, the use papers towels and responsibility for paying for PPE.
Banking during lockdown: cash deliveries, dedicated telephone numbers and more

The Post Office has launched a cash delivery service to help vulnerable customers, with the help of the Department for Work and Pensions (DWP).
How can someone who is isolated at home access benefits in cash

The Post Office has launched a cash delivery service to help vulnerable customers, with the help of the Department for Work and Pensions (DWP).

Conductive Care

Conductive Care provides one to one Conductive Education Sessions to children and young adults with neurological and mobility impairments, within their own home.
SWAN UK

Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support. SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.
Niemann-Pick UK (NPUK)

NPUK provide practical and emotional support, advice and information to those affected by Niemann-Pick diseases and facilitate research into potential therapies..
Healthtalk

A website patient information sharing resource