From the Chief Executive
The National Rheumatoid Arthritis Society is ‘the voice’ of people affected by Rheumatoid Arthritis (RA) in the UK. Founded in 2001, we are the only UK charity devoted specifically to RA, and we launched a new service for families, children, young people and adults affected by Juvenile Idiopathic Arthritis in July 2014, called JIA-at-NRAS.
When I founded the charity in 2001, it was always my intention that we would include JIA in our core activities and services, however, the adult RA service took off with speed and absorbed all of our time and funds and so until recently we have not had the ability to provide more than basic information in regard to JIA on our NRAS website. However, all that changed in 2012 when we were successful in obtaining some funding to enable us to really look at JIA and JIA services across the UK with a view to being able to start to provide a much more comprehensive service for families and young people affected by JIA.
The first thing we did was to spend a year producing a major report, 'A Focus on JIA' by visiting rheumatology and paediatric rheumatology centres across the UK to find out what the state of JIA service provision was. We talked to many different clinicians and allied health professionals, parents, young people with JIA and NHS Managers and effectively mapped what service provision looked like.
It is important to be clear to anyone affected by JIA who is reading this or interacting with our JIA-at-NRAS web area that JIA and RA are not the same. JIA does not ‘become’ RA after the age of 16. If you are diagnosed with JIA, then you continue to have JIA, unless your disease goes into remission, after the age of 16. JIA is not one disease, it has a number of different types and you can read about the different types here. There are things that JIA and RA have in common, such as being types of inflammatory arthritis, but they are different and have some similar but a number of different consequences.
We take pride in the fact that we are patient-led and everything we do is about empowering those we represent to live the lives that they want to and achieve their goals despite their disease. We design, coordinate, fund and deliver a comprehensive and wide range of high quality products and services for all affected by RA and JIA.
Our Core Values
We approach our commitment and responsibilities to all with empathy, professionalism, passion and enthusiasm. We continually strive to achieve the best results and outcomes that we can for those we represent. These core values underpin the way we work.
At all times, we act:
We work openly and ethically, with integrity, honesty and independence
We are creative and constantly challenge the status quo, always striving for better and looking for new ways to add value, whilst basing what we say and do on the best evidence and our Members’ experiences
Our staff are not just enthusiastic and committed, they are passionate about making a positive difference for all those we represent
We work with many different organisations, contributing significantly to alliances and coalitions
We are results focused and deliver on our projects and campaigns. Our many awards are testament to our achievements
We act with sensitivity and compassion, respecting the needs and preferences of the individual regardless of nationality, creed, gender, age or ethnicity, while at the same time representing the entire community affected by RA or JIA in the UK, encompassing adults and young people, families, carers and rheumatology healthcare professionals.
I hope this new part of our website for those affected by JIA will provide you with the information about JIA and living with JIA which you are seeking, however, we need your input and your stories so we would like to hear from you! our JIA team are only a phone call away and ready to answer any questions and provide you with the information and support you need.
With best wishes