Report on the 2nd meeting of Young PARE
21-23 October 2016, Retie, Belgium
Young PARE is the youth group of the PARE standing committee of EULAR. It represents young people with RMDs from the EULAR members and its vision is to improve the quality of life of young people with rheumatic and musculoskeletal diseases (RMDs). Young PARE’s mission is to establish and strengthen nation RMD youth groups across Europe; to create and support the European network of RMD youth groups to exchange best practices; to empower youth leaders; and to ensure that the voice of young people with RMDs is heard on all levels in society. Young PARE organized their 2nd annual meeting in Retie, Belgium and Agora was invited to participate represented by Elena Tsigki, Agora’s Secretariat and Project Coordinator.
On Friday evening, all the delegates were gathered in the main conference room to have an ice breaker and play a fun quiz about getting to know EULAR better. On Saturday morning, the first official day of the conference, Linda van Nieuwkoop, the project coordinator of the conference and former Young PARE Board member, opened the session, welcomed all the delegates and introduced the program of the conference.
Then, Petra Balazova, the Chair of the Young PARE Board took the floor to welcome everyone. She continued by making a presentation to introduce all the delegates to EULAR’s structure, as well as the various programs and tools provided. She continued by briefly explaining the work done by Young PARE, its vision and mission and finally the next steps and aims for the near future.
Following the introductory meeting all delegates attended two rounds of workshops, preassigned to them. Agora’s representative attended Workshop 1, “Pitching your ideas”, facilitated by Alessia Alunno (EMEUNET- Rheumatology Unit of the University of Perugia) and Linda van Nieuwkoop. Alessia gave a presentation on how to pitch an idea in different settings and to different audiences. During this presentation, the dos and don’ts of pitching an idea were presented, as well as tips on how to form an idea into an actual pitch. Summing up, Alessia advised the participants to always try to get their pitch into the right perspective and deliver their idea clearly to the targeted group/person. Right after the presentation, Alessia and Linda led two discussion groups where participants had to design and pitch an idea. Both Alessia and Linda as group leaders gave everyone valuable feedback and tips to improve their pitching skills.
Right after, the representative of Agora, Elena, attended Workshop 3 on “Working with volunteers”, facilitated by Wendy Olsder (Young PARE and Youth-R-Well.com) and Irene Murphy (Arthritis Ireland). The session begun with an icebreaker and a short brainstorming, followed by a case study presentation on Ireland’s system of cooperating with volunteers. Irene spoke about the importance of having a strong policy which will set the rules for both the volunteer and the employee. She also spoke about the importance of giving clear tasks to volunteers in order for them to work more efficiently, create a good environment and finally stay longer with the organization. Following the presentation, the attendees were divided in two groups to discuss ideas of “How to empower and retain volunteers”, as well as “How to attract volunteers”. It was agreed that volunteers should not be considered as replacements for paid stuff and that their voluntary work should be acknowledged and appreciated. Furthermore, a sort of “reward system” (which is not necessarily bound to money or tangible rewards- a simple thank you or a nice gesture could also suffice) should be created to motivate volunteers more and make them feel valued and appreciated.
The afternoon session of the conference started with six walk in workshops:
- “Writing abstracts for the EULAR Congress”, by Nele Caeyers (Chair-Elect of the Standing Committee of PARE)
- “Taking action with the Knowledge Transfer Program (KTP)”, Silvia Ostuzzi (ANMAR, Italy)
- “Designing the perfect poster presentation and online graphics”, Nina Orlowska (REF, Poland)
- “Using social media to deliver effective and engaging interactions”, Simon Stones (Young PARE working group, UK)
- “Making the most out of the Virtual Knowledge Centre (VKC), Jeanette Andersen (Lupus Denmark) & Dora Papastavrou (ELEANA)
- “Writing effective articles for your website and print media”, Wendy Olsder (Young PARE working group, Youth-R-Well.com, The Netherlands)
The afternoon session was continued by the digital posters presentations session. Agora’s representative presented a poster about the “Train the Trainers” self-management program with a specific focus of what it could offer to young people. During the presentation of Agora’s poster, emphasis was given to the need of evaluating this program but also the important of taking it a step further and closer to youth, as it will benefit youth in many ways and make their life easier and more qualitative. All the posters presented by the rest of the participants were very interesting and informative about their projects and campaigns of raising awareness (especially during WAD) organized in their countries.
The conference closed with the summary and conclusions. We had a nice discussion about our future goals and about what we would expect to change in the next five years.
In the evening, all delegates enjoyed a very warm and hearty dinner at the Community Centre in Mole, the place where Nele leaves. The hospitality of Nele and her whole family who came in to cook for everyone made this dinner a very sweet and unique experience for everyone! During dinner all delegates had the chance to socialize and speak about their dreams of changing the world to make it a better place for people with RMDs.
On the second and las day of the conference the delegates participated to an informal meeting facilitated by Petra Bazanova on engaging with Young PARE and offering young people the chance to become more active. The sustainability of Young PARE and the continuation of the great work it is doing was also discussed. The conference was wrapped up by Petra and Linda who thanked everyone for coming.
All rights reserved to Young PARE.