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.
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”.
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.
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 evidence-based 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:
Phone: 0845 458 3969