Rheumatology charities

In this resource you will find a list of some of the UK’s charities supporting children, young people, young adults and their families living with rheumatic conditions.

Please get in touch and reach out for support:

• CCAA – Children’s Chronic Arthritis Association
• JAR – Juvenile Arthritis Research
• JIA at NRAS – Juvenile Idiopathic Arthritis at the National Rheumatoid Arthritis Society
• Lupus UK
• Versus Arthritis – Youne People and Families Service
• Olivia’s Vision
• Scleroderma and Raynaud’s UK
• Myositis UK

Children’s Chronic Arthritis Association (CCAA)

Founded in 1989, the CCAA is a leading juvenile idiopathic arthritis (JIA) charity run by a group of people who have personal experience with JIA. They have a passionate interest in helping support children with JIA and their families, to provide a support network for children with arthritis and their families.

Everyone involved in the charity has been affected by JIA in one way or another, either as parents, siblings or young people with JIA themselves. They offer emotional and practical support to maximise choices and opportunities and raise awareness of childhood arthritis in the community. They organise family information weekends to enable families to meet others for networking, support and information about JIA.

Visit CCAA – Kids With Arthritis (JIA) at @CCAA_org on X (Twitter) or email: info@ccaa.org.uk

Juvenile Arthritis Research (JAR)

Juvenile Arthritis Research (JAR) is the only UK-wide charity focusing solely on juvenile idiopathic arthritis (JIA). They are a parent-led charity with direct experience of JIA, and are run entirely by volunteers.

Their vision is a world where no child has to suffer from arthritis and are working towards this through their research work, improving earlier diagnosis through awareness, and supporting those affected by JIA.

Their support services include free age appropriate resources for children and young people and their families through:

• Little Box of Hope packs
• a secure private peer-support network
• 1:1 email and direct messaging helpline support for families,
• online support resources including our “parent zone”
• mental health and wellbeing hub
• school toolkits for educational settings
• information for frontline health professionals and communities

Visit their mental health and wellbeing hub, follow their X (Twitter) @jarproject, Facebook, Instagram, or email: kipo@jarproject.org

Juvenile idiopathic arthritis at the National Rheumatoid Arthritis Society (JIA at NRAS)

NRAS is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). NRAS provides expert and wide-ranging services to support, educate and campaign for people living with these complex autoimmune conditions, their families and the health professionals who treat them.

Follow their X (Twitter) @JIA_NRAS

Lupus UK

Lupus UK is the only national registered charity supporting people with systemic lupus and discoid lupus. They also help people approaching diagnosis. They have over 5500 members and several Regional Groups around the UK who arrange medical talks, publish local newsletters, set up local occasions and organise fundraising events. Lupus UK also produces an informative national magazine with lupus articles, letters, reports, and photographs, and operates a strong Grant Programme for research purposes and welfare.

Follow their X (Twitter) @LUPUSUK

Versus Arthritis

Versus Arthritis to help people with arthritis get the treatments and support. They are a UK-wide charity supporting people of all ages living with arthritis, and have a dedicated young people and family service for children and young people up to 24 years old. They work in partnership with NHS specialist rheumatology centres across the UK to provide support, advice and guidance in hospital settings and communities. They offer:

• new diagnosis and transition packs
• 1:1 support with an experienced worker
• peer support from our amazing network of volunteers
• advocacy support around care, schools, employment
• a programme of events, activities, residential and workshops
• a tracker app for teens and young people to track their condition
• safe online communities
• blogs and podcasts
• free resources

Follow their X (Twitter) @VersusArthritis, their Instagram and their Facebook, or email YPFSUK@versusarthritis.org

Olivia’s Vision

Olivia’s Vision was established in 2010 to provide information, support and advice for anyone affected by Uveitis. They have lots of information on medical terms and medications alongside personal stories.

Scleroderma and Raynaud’s UK

SRUK is dedicated to improving the lives of people with Scleroderma and Raynaud’s Phenomenon. They do this by investing in research, improving awareness and understanding of the conditions and providing information and support to those affected. SRUK have specific fact sheets aimed at children and teenagers with useful tips on how to manage the conditions. They provide useful booklets for schools. They also have a shop where warming measures such as socks and gloves can be purchased.

Myositis UK

Myositis UK is a charity that supports information to those affected by myositis. They have specific information on juvenile dermatomyositis (JDM) including a book about Teddy-Bo to help parents, carers and professionals explain this rare condition to children.