Juvenile Arthritis Research is a charity supported by donations (registered charity number 1091620). Our vision is a world where no child has to suffer from arthritis. Read more about our aims below.
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Support
Support
Being told you have juvenile idiopathic arthritis can be a scary time. You and your family might feel unsure about what having JIA means, or what the future holds. You might feel alone, particularly if you don't know anyone else with the condition or if you haven't heard of JIA before.
At Juvenile Arthritis Research we want to support you and your family on your journey. We provide support packs and other resources, and are continuing to build new ideas and projects to help young people with JIA.
Awareness
Awareness
Around 1 in 1,600 children are diagnosed with JIA*. Sadly, delays in diagnosis are common due to a lack of awareness. Some children and young people wait more than 5 years before they are diagnosed with JIA.
Raising awareness that children and young people get arthritis is really important. Increased awareness helps improve diagnosis, and that can lead to better outcomes for people with JIA. As we increase awareness of the condition, we can help make life better for children with JIA by removing the stigma attached to having a long-term, but often invisible, health condition.
We raise awareness through regular media releases, events and activities including via social media and online activities. We have developed the #ThinkJIA campaign and resources, for use with schools, families, health professionals and communities.
Research
Research
We support research by universities, hospitals and industry as recognised patient partners. Through this, we represent the needs and views of the JIA community to researchers. We support research and quality improvement projects to try to understand the causes, the effects and the impacts of the condition. Ultimately, we want a cure for JIA. Members of our volunteer team are also involved in research projects, and we share information from our support and awareness activities at international conferences to promote best practice with partners around the world.
Your clinical team may also invite you to take part in studies that they are running.
Research is really important, as it helps us understand the complex ways in which JIA 'works' and which medications and treatment work best for each person.
If you are invited to take part in research, you should always be told what the research is for, what they are hoping to find out, what your involvement would be, and how you can take part. You and/or your parents (depending on your age and what the study is) should be asked to give informed consent before joining a study, and you never have to agree to be in a research study unless you want to be. It is always OK to ask questions about the research before you decide.
Advocacy
Advocacy
Through the work we do in support, awareness, research and quality improvement, we advocate for the needs of all those with JIA and their families to policymakers and healthcare professionals.
We seek to improve the quality of life for children and families with JIA by addressing the lack of medical understanding in primary care, as well as the wider stigma attached to having a long-term but often ‘invisible’ health condition. We regularly participate in regional and national rheumatology and healthcare forums, working in collaboration with both academic and clinical partners to advocate for the needs of families with JIA, whose needs would otherwise be left off the table.
We work closely with strategic partners to make the voices of those affected by JIA heard and represented. This includes the British Society for Rheumatology (and our European partners at PReS and EULAR), NHS England, National Voices, and the Children & Young People's Mental Health Coalition, amongst others.
We also support families to enable them to advocate for themselves in healthcare decisions - helping them through peer support, information, guidance, resources and one-to-one support.
Our core values are:
Expert - We develop a deep and broad understanding of juvenile arthritis and how it attacks children and young people. We look at research not just in the field of juvenile arthritis, but also other autoimmune and related conditions that may hold vital clues to help us find a cure for JIA.
Collaborative - We collaborate with others (both here in the UK and globally) and share ideas and knowledge but we will never compromise on our vision.
Boundless - We demand better. More than treatment, more than respite, more than relief, and are fearless in our pursuit of a cure.
Watch our short video to find out more about us. This was a video we made towards the start of our journey, and our resources and services have increased immensely since then.
* "Around 1 in 1,600 children are diagnosed with JIA" is based on our latest research (https://doi.org/10.1093/rheumatology/kead700). The previous estimate of around 1 in 1,000 may continue to appear on our website and in some of our printed materials whilst we update to the new figures.
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