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OP0172 PARE WORKING TOGETHER FOR CHILDREN AND FAMILIES LIVING WITH RHEUMATIC AND MUSCULOSKELETAL DISEASES: THE EUROPEAN NETWORK FOR CHILDREN WITH ARTHRITIS (ENCA)
  1. Simon Stones1,2,3,4,5,
  2. Mirjam Kepic2,6,
  3. Saskya Angevare2,7,8,
  4. Sammy Ainsworth2,3,9,
  5. Wendy Costello2,10,
  6. Anton Gruss2,11,
  7. Anita van de Louw2,12
  1. 1Fibromyalgia Action UK, Paisley, United Kingdom
  2. 2European Network for Children with Arthritis, Geneva, Switzerland
  3. 3RAiISE, Clitheroe, United Kingdom
  4. 4EULAR Young PARE, Kilchberg, Switzerland
  5. 5University of Leeds, School of Healthcare, Leeds, United Kingdom
  6. 6Društvo za pomoč otrokom z imunskimi boleznimi, Ljubljana, Slovenia
  7. 7KAISZ, Utrecht, Netherlands
  8. 8Autoinflammatory Alliance, San Francisco, United States of America
  9. 9Alder Hey Children’s NHS Foundation Trust, Liverpool, United Kingdom
  10. 10Irish Children’s Arthritis Network, Tipperary, Ireland
  11. 11KOURIR, Paris, France
  12. 12Jeugdreuma Vereniging Nederland, Apeldoorn, Netherlands

Abstract

Background The European Network for Children with Arthritis (ENCA) is a pan-European network led for and by parents and young people with rheumatic and musculoskeletal diseases (RMDs). ENCA’s activities are delivered voluntarily by parents and young people passionate about improving the care and treatment of children and young people (CYP) with RMDs. This is done through education, innovation, networking and empowerment. ENCA is associated with the Paediatric Rheumatology European Society (PReS).

Objectives ENCA aims to facilitate the exchange and dissemination of information, knowledge and best practice with regards to paediatric RMDs across Europe, working in partnership with national patient organisations for CYP and families living with RMDs. ENCA also aims to provide international awareness, engagement and research opportunities.

Methods ENCA is managed by a board of elected members, who are all volunteers with national patient organisations. ENCA hosts an annual conference in conjunction with PReS, inviting attendance from national patient organisations. Aside from a newly refreshed website, ENCA hosts a closed Facebook and WhatsApp group for national patient organisation representatives, enabling real-time communication and the instant sharing of knowledge and best practice. ENCA hosts an annual ‘Fun with JIA challenge’, aimed at empowering CYP with RMDs to share their story; and has been involved in establishing a new international awareness campaign for 2019, titled ‘World young Rheumatic Disease (WORD) day’. In addition, ENCA cooperates with a number of international organisations with shared goals in rheumatology, representing the paediatric voice.

Results Since its inception in 2002, ENCA has enhanced the communication and shared learning between national patient organisations, by embedding the voice of CYP and families into research and advocacy activities. The ‘Fun with JIA challenge’ delivered since 2017 has provided CYP with RMDs across Europe with the opportunity to share their stories through film. In addition, ENCAs’ cooperation with PReS has recently facilitated the planning and launch of WORD day on March 18th, 2019. The need for a specific paediatric RMD awareness day was identified as a priority from national representatives, in light of the relatively limited attention that paediatric RMDs receive. WORD day helped to raise parental and professional awareness about paediatric RMDs.

Conclusion As parents and young people living with RMDs, ENCA has enabled individuals and national patient organisations to develop their knowledge in relation to paediatric RMDs. ENCA provides several opportunities for networking and the sharing of best practices between national patient organisations and professionals, through informal and formal activities focused on paediatric RMDs. International networking helps individuals and communities to navigate through challenges with the support of others with a shared-goal.

Reference [1] Egert Y, et al. PARE0005|Brief Overview of ENCA (European Network for Children with Arthritis). Ann Rheum Dis2016; 75:1321.

Acknowledgement ENCA would like to acknowledge PReS for their financial and professional support, and MCI for secretariat support.

Disclosure of Interests Simon Stones Consultant for: SS has provided consultancy services to Envision Pharma Group, though this is not related to the contents of this abstract., Speakers bureau: SS has undertaken speaking engagements for Actelion, eyeforpharma, Four Health, Janssen and Roche, though these are not related to the contents of this abstract., Mirjam Kepic: None declared, Saskya Angevare: None declared, Sammy Ainsworth: None declared, Wendy Costello: None declared, Anton Gruss: None declared, Anita van de Louw: None declared

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