Affiliations and accreditations
At Juvenile Arthritis Research we know how important it is to work together collaboratively. We can achieve so much more by working together than in isolation. And we also know that there are some amazing organisations and networks out there to help support us as a charity, and to enable us to be more effective.
There are many different groups, networks and organisations that charities can affiliate themselves with. Of course, some are better than others and some are more effective than others. We are careful which networks we join, and only link with those that add real value to the people we exist for - children with juvenile idiopathic arthritis and their families. Any affiliation has to help us be more effective in our research, awareness and support work as well as policy-making and lobbying activities that take place behind the scenes. Every penny donated to us makes a real difference, so we won't join networks just for the sake of it. Whilst many are free to join, membership of certain networks costs money that we believe could be better spent supporting children and their families.
This page lists the organisations and networks we are part of and the reasons why.
We are proud to be members of ENCA, the global network for children with arthritis and autoinflammatory conditions. They are the umbrella body that supports all patient organisations for children with arthritis, rheumatic conditions and autoinflammatory diseases across the continent of Europe and beyond. Our founder is a Member of the Board of ENCA.
How does this help children with arthritis? ENCA is the leading organisation in Europe to champion the needs of children with arthritis. Being part of ENCA, and being on the Board, helps us to share best practice and improve the lives of children with arthritis. It also gives us a voice on a national and international basis to represent children with JIA and their families.
We are excited to be part of the Connect Immune Research partnership - a partnership that wants to understand how immune conditions are linked. Find out more about the partnership here.
How does this help children with arthritis? Time and time again, we have witnessed projects that could hold real clues that would bring us closer to a cure being rejected from funding applications in favour of simpler projects being accepted. We want to see those brave, bold projects receive future funding. The research projects that are courageous enough to look at some of the 'big' questions in relation to JIA... the questions that have remained unanswered because no-one has been looking for those answers. We are excited for the future breakthroughs that this partnership holds.
We are members of the Children and Young People's Mental Health Coalition, which brings together organisations to campaign jointly and provides a strong unified voice speaking out about children and young people’s mental health.
How does this help children with arthritis? We know that children and young people with JIA can experience challenges to their mental health - due to their JIA, the treatment, or other reasons. Supporting children and young people is one of our core aims; supporting children's mental health is part of that; and by working collaboratively with a wide network of organisations equally committed to supporting young people, we can have a bigger impact at a national policy and resource level.
The British Society for Rheumatology (BSR) is the UK's leading specialist medical society for rheumatology and musculoskeletal professionals. Our founder is a member of the BSR, allowing us to be part of the diverse community of professionals from across the UK.
How does this help children with arthritis? Being part of the BSR gives access to key resources and new information as soon as it is available. As part of the BSR community, we have access to the UK's leading professionals. We work closely with the BSR in our work.
As a charity, we are registered with the Charity Commission for England and Wales (registration number 1091620).
How does this help children with arthritis? It shows we are a registered and properly regulated charity.
Every organisation in the UK that handles personal information (including names, addresses or email addresses) of individuals must by law be registered with the Information Commissioner's Office also known as the ICO, unless they are exempt. We are registered with the ICO, and you can check that using their register search tool. As well as complying with the law, being registered shows we care about the data we hold about people and we will work hard to keep it safe. We will never sell your personal data, and will never share it without your consent.
How does this help children with arthritis? It shows we care about the information we hold and look after it properly.
We are also registered with the Fundraising Regulator. This shows we are committed to their Fundraising Promise and work hard to ensure all our fundraising activities are carried out fairly, ethically and sustainability. Being registered also allows us to access their support services to help us become more effective in our fundraising activities.
How does this help children with arthritis? It demonstrates our commitment to ethical, fair and sustainable work.
We are delighted to hold the Charity Excellence Framework Quality Mark. The CEF provide a detailed set of resources that allow us to monitor and improve all aspects of our work.
How does this help children with arthritis? We are committed to continuous improvement, which helps ensure we are as effective as we possibly can be.
We are proud members of National Voices, the leading coalition of health and social care charities in England. The coalition has more than 200 members covering a diverse range of health conditions and communities, connecting the experiences of millions of people.
How does this help children with arthritis? By working with organisations providing support for other health conditions, we have a stronger voice in political campaigning and social lobbying. The areas of shared concern at a national level can be addressed more effectively when we work together.
We are members of the NCVO, the body that represents charities across the UK. They provide support to charities, run training events, and lobby on our behalf.
How does this help children with arthritis? Having access to a wealth of experience and skills outside of our own organisation helps us to learn and develop quickly. This helps us ensure our time and focus can continue to be children with JIA and their families.
We work with a wide range of hospitals, universities and research centres throughout the UK and globally, usually on a project-by-project basis. This enables us to work collaboratively in research projects, build new awareness-raising activities, and develop improved support resources. By working collaboratively with experts in other areas, we can make a real difference quickly.
For example, we support the CLUSTER study, a major UK project looking at improving our understanding of which medications are likely to work for an individual child with JIA. As well as our own research, we also support and promote high-quality research that helps increase understanding of childhood arthritis.
How does this help children with arthritis? Working with other experts from around the world helps us reach our aims of research, awareness and support.
We are proud to be World yOung Rheumatic Diseases Day Ambassadors, helping raise awareness of childhood rheumatic diseases like JIA. One of the core aims of WORD Day is reducing delays in diagnosis through increased awareness because early diagnosis changes lives. There is a very close alignment between the aims of WORD Day and our #ThinkJIA campaign which is why we are such strong supporters of this incredible global awareness day. You can find out more about WORD Day and why it matters on our WORD Day Hub.
How does this help children with arthritis? Increased awareness leads to faster diagnosis, resulting in better outcomes for children. It also helps reduce stigma and increase understanding.
We work with the WHO Paediatric Global MSK Task Force, who are championing improved awareness of childhood arthritis and access to effective treatment.
We also work closely with other charities and patient organisations, such as iCAN Ireland, KAISZ in the Netherlands, and Kourir in France, so we can learn from each other and help improve the lives of children with arthritis and their families.
We are committed to going above and beyond what is required of us. We want to see an end to childhood arthritis, we will continue to raise awareness that children get arthritis, and we will keep providing support to families affected by JIA. But we will not carry out our work at the expense of the planet - everything we do is carefully checked to make sure we are reducing any negative impact on the environment, and we work with ethical suppliers upholding the highest ethical and environmental standards. We are pleased that our website is hosted using green energy, too. You can find out more in our ethical and environmental policy.