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Rheumatology (United Kingdom) ; 61(SUPPL 1):i100, 2022.
Article in English | EMBASE | ID: covidwho-1868411

ABSTRACT

Background/Aims NRAS understands that inflammatory arthritis affects people of all ages. In early 2020 NRAS decided that a voice of the JIA community was needed to inform and provide guidance on a framework for JIA services at NRAS. The group would also empower younger people with RA, who are often frustrated by the perception that the condition 'only affects elderly people'. Methods NRAS recruited a group of young people with lived experience of JIA and RA to reflect the target population of the JIA service age range. The group were drawn from diverse backgrounds and now it includes representation from the Cabinet office, health care professionals and experts in youth engagement and digital marketing together with PhD students and creative professionals. Results Throughout the last 12 months the Young Voices Panel have developed and prioritised the service framework for young people with inflammatory arthritis and JIA-at-NRAS. One of the main priorities was peer-topeer support and now having the JIA Parents online group we can offer this to parents, alongside our other new JoinTogether online groups as well (e.g. 18 to 35year olds, Working with inflammatory arthritis, Parenting with inflammatory arthritis and Exercise and Back to Sport with inflammatory arthritis). The Young Voices have shared their stories and experiences in Facebook Live sessions during RAAW, Wear Purple for JIA in November 2020 and recently for the new #WearPurpleForJIA Wellbeing Week in June 2021. Some of the Young Voices were also part of the focus group for the new Medicines in JIA booklet which has now been launched. They spoke with parents during our zoom event Coping with JIA during COVID-19 in March to show parents that their children can thrive in life whilst learning to manage to the ups and downs that RA/ JIA has. They also shared their experiences with young people at the young person's event Navigating your future with inflammatory arthritis in April discussing how to tell friends and partners about their disease and where to find support at university and explain to employers about the conditions. They have also helped NRAS focus on what young people may want from the new JIA digital membership and participated in raising awareness for young people with JIA/RA podcasts and articles for Enable magazine. Conclusion The Young Voices Panel have been an integral part of NRAS and will continue to develop the service framework and be the voice of young people with JIA/RA. Feedback from events: 'Thank you for sharing your stories and experiences, you are inspirational'. 'I am so glad that young people are getting of a voice with regard to being diagnosed with arthritis'.

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