NRAS launches new website for children and families
affected by juvenile idiopathic arthritis (JIA)
4th February, 2015
The National Rheumatoid Arthritis Society (NRAS) today announced the launch of a new website
targeted at parents and families of children and young people with Juvenile Idiopathic Arthritis (JIA),
as well as health professionals involved in the care of young people with JIA.
www.jia.org.uk
NRAS, who are Information Standard accredited, have been working for months on the preparation
of information for this new site to support the JIA@NRAS service. They anticipate that families will
warmly welcome the detailed information about JIA, getting to a diagnosis and understanding how
to negotiate the NHS in order to get the right care for their child/young person.
Ailsa Bosworth, CEO of NRAS said “Our aim is to provide parents, families, young people and health
professionals with the best and most up to date resource in the UK on all aspects of JIA from a
family/patient perspective. Getting to a diagnosis is often a difficult and sometimes traumatic
process for parents and we hope that this website will help parents who are concerned about their
child, to get the right help more rapidly. We will link to other organisations and charities who
provide relevant sources of help and support so that everything a parent could want to know is in
one place.”
Dr Clarissa Pilkington, President of the British Society for Paediatric and Adolescent Rheumatology
(BSPAR) said of the work, “We are very pleased NRAS is launching its new website for families in the
UK who are living with Juvenile Idiopathic Arthritis (JIA). This new service is very much wanted and
needed by families and health professionals alike. The reputation of NRAS is well established in the
adult rheumatoid arthritis community and is synonymous with empowering, educating and
improving peoples’ lives as well as campaigning on behalf of those affected by rheumatoid
arthritis. We believe they have the knowledge and expertise to successfully support families,
children and young people affected by JIA and look forward to working with them on the service”
The website is in large part a response to requests for such a resource from parents, families, young
people, health professionals and NHS Managers who were interviewed for the ‘A Focus on JIA’
Report which was published by NRAS at the end of 2013.
Clare Jacklin, NRAS Director of External Affairs said, “we will continue to build this resource,
providing important articles, case studies and information about ‘living with JIA’, during the course
of 2015 and invite families and young people who wish to get involved, to support this work”.
About JIA
Juvenile Idiopathic Arthritis (JIA) is an inflammatory disease which causes chronic arthritis in children
and young people and affects approximately 12,000 children (1 in 1000) under the age of 16. The
severity of arthritis can vary from mild to extremely disabling and symptoms include stiff, painful and
swollen joints. JIA is also associated with other complications such as blindness which results from
uncontrolled inflammation around the lens of the eye and can also significantly delay physical
development in the very young, cause permanent joint damage and deformity and delay puberty.
The aim of JIA treatment is to achieve complete absence of disease by controlling inflammation and
joint pain, reducing the number of affected joints, preventing long term damage and improving
quality of life. Approximately 50% of children will continue into adulthood with active disease which
remains JIA. Point of clarification: JIA does not ‘become RA’ after the age of 16, it remains JIA into
adulthood.
About NRAS
The National Rheumatoid Arthritis Society is ‘the voice’ of people affected by Rheumatoid Arthritis
(RA) across the whole of the UK and in due course, with the addition of our new JIA@NRAS service,
we hope to be so for Juvenile Idiopathic Arthritis (JIA). Founded in 2001, we are the only UK charity
devoted specifically to RA and JIA. We provide help, support, information, education and advocacy
and in respect of RA, supported self-management programmes.
About the Information Standard
The Information Standard is a certification programme for all organisations producing evidencebased health and care information for the public. Any organisation achieving The Information
Standard has undergone a rigorous assessment to check that the information they produce is clear,
accurate, balanced, evidence-based and up-to-date.
For more information about NRAS and JIA@NRAS please contact:
Ailsa Bosworth
Chief Executive
NRAS
Email: ailsa@nras.org.uk
Phone: 0845 458 3969