Background/Purpose: Juvenile Idiopathic Arthritis is a chronic disease that affects a child’s school life and relationships, creating social isolation for youth and young adults. Take a Pain Check Foundation and the Canadian Arthritis Patient Alliance are patient-led and managed. While both organizations focus on supporting people with rheumatic conditions, TAPC focuses specifically on empowering youth with rheumatic diseases. We will describe the efforts of these two organizations as they work collaboratively to support youth and increase awareness of the unique challenges of young people living with Juvenile Idiopathic Arthritis.

Intervention: TAPC and CAPA both collaborate through informal and formal meetings, advice, podcast episodes, blog posts, and co-hosting events. Information is shared from both groups on various social media channels to engage with youth living with arthritis. We have jointly developed and executed Instagram Live events to support young people with JIA; we engaged youth in the planning and execution of these events. This campaign consisted of CAPA and TAPC hosting two Instagram Live events: “Growing Up with Juvenile Arthritis” and “Exploring Self-Advocacy in Juvenile Arthritis”. Both discussions focused on personal experiences with chronic illness, challenges of speaking up as a young person, and ways that these individuals worked to become advocates for themselves.

Maintenance: TAPC and CAPA are growing and have reached a considerable Canadian and international following on social media. Collaboration has expanded the reach of TAPC and CAPA through a novel approach to engaging directly with youth communities. The latest event reached 368 people – 123 being followers and 245 being non-followers, with continued viewing after the event on Instagram, Facebook, and YouTube. Participants of the events all indicated that they enjoyed the event when giving feedback on our polls. The collaboration has been successful in creating a greater sense of community and understanding as we work towards a common goal of increasing patient knowledge and confidence in decision making.

Quality of Life: TAPC and CAPA have impacted the lives of several individuals diagnosed with rheumatic diseases as noted by the following people living with JIA:

“I really enjoyed participating in the Instagram Live event…Sharing my experiences about self-advocacy made me realize how much I’ve learned and grown since I began my advocacy journey…it reaffirmed the importance of community and learning from one another in disability justice work.”

“Speaking on self-advocacy was a fantastic way to share my lived experience and directly deliver actionable tips and advice to the arthritic community! As a disability advocate, opportunities like this build networks and relationships that continue after the event to strengthen our community.”

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patients-raising-awareness-for-patients-a-collaborative-partnership-between-take-a-pain-check-foundation-and-canadian-arthritis-patient-alliance/