The voice of young people across Europe living with rheumatic and musculoskeletal diseases

Theodora Papastavrou EULAR Young PARE

About Young PARE

Young PARE is a European network of national youth leaders led by the PARE youth working group

Vision

Young PARE aims to improve the quality of life of young people with rheumatic and musculoskeletal diseases (RMDs) by raising the profile of these conditions, and by creating a

network of individuals who work in European countries on behalf of young people with RMDs

Meet the working group

Country fact sheets

Strategic objectives

1. By 2020, national youth leaders are integrated into EULAR, especially the EULAR Standing Committee of PARE

2. By 2020, there is more awareness in society of the specific needs of young people with rheumatic and musculoskeletal diseases (RMDs)

3. By 2020, health care services are interdisciplinary, more holistic and focused on the need of tailor-made information, including social and psychological support for young people with RMDs.

4. By 2020, educational institutions across Europe are more flexible and assistive inm supporting high quality education of young people with RMDs.

Strategic objectives

5. By 2020, employers and other stakeholders are more aware of the needs of young people with RMDs and young people receive more support to find a suitable job

6. By 2020, Young PARE campaigns for societal changes that make the world more inclusive for young people with RMDs

7. By 2020, every European country has an active national youth group for young people with RMDs

8. By 2020, PARE has established an active European network of national youth groups called Young PARE

Some of our achievements so far • Planning and leading on two youth-focused workshops at

the PARE Conference in Sofia with great success (2016), planning two more (2017) at the PARE conference in Lisbon (2017

• Various involvements as speakers, abstract and poster presenters at EULAR Congress

• Launch of Virtual Knowledge Centre, online tool to share best practice

• Established a new website (www.youngpare.org) and social media channels

• PARE Abstract Award and Edgar Stene Prize 2016 won by Young PARE working group members (Wendy and Simon, respectively)

Edgare Stene Prize – the voice of the patients

• Annual writing competition

• Empowering patients across Europe to share their individual stories

• Best essays are compiled to an annual booklet

• Powerful tool to demonstrate the courage, wisdom and visions of people with RMDs

• Young PARE Conference “Change the future” - October 2016

• Increasing collaboration with PARE, EMEUNET (trainee rheumatologists and rheumatology researchers), the wider EULAR community, ENCA and the European Youth Forum

• Report to PARE Board on status of strategy implementation • New project application to EULAR Executive Committee

Our next steps

Transition – Importance of coping with..

An active process that attends to the medical, psychological, educational and vocational needs of adolescents and young people as they move from child to adult-centered care

The goal is to ensure continuity and quality of clinical care

Society for Adolescent Health and Medicine

Lost in transition Affects many young people with various chronic diseases The age of transfer is flexible and need to fit with the young

person’s home and school life Transition process ( it is not one size fits all situation but an

individualized transition plan ) Collaboration between health professionals, pediatric and adult

colleagues collaboration is critical in order not to be lost in between

A shared responsibility to get it done right Collaboration is critical in order not to be lost in between

Communication between health professionals, pediatric and adult colleagues

Check out our website

www.youngpare.org

Follow us on social media