When you make a choice, you change the future. That choice could be a disaster, or the best thing you’ve ever done. We make conscious decisions to change the future based upon our past experiences, usually to make our lives, or the world, a better place. Having just returned from the 2nd EULAR Young PARE conference, titled ‘Change the future’, I’ve never been more ready to change the future.
I’ve been a member of the EULAR Young PARE working group since January 2015, and it really has been a privilege to work with this group, and a large number of individuals across Europe. Before I tell you about the conference, let me provide you with a brief background of EULAR. The European League Against Rheumatism (EULAR) is the organisation which represents people with arthritis and rheumatism, health professionals and scientific societies of rheumatology across Europe. EULAR has eight standing committee, which manage and perform the various activities of EULAR on behalf of the executive committee. Standing committees provide a forum for specialists from each European country to meet and work together on specific projects.
PARE – People with Arthritis and Rheumatism in Europe
The national organisations of people with arthritis and rheumatism in Europe (PARE) work together via the EULAR Standing Committee of PARE. Each member country is represented with one delegate in the committee. The EULAR Standing Committee of PARE gathers representatives of people with rheumatic and musculoskeletal diseases (RMDs) around Europe to work together towards improving the quality of life for more than 120 million people in Europe living with these conditions. The committee’s vision is of people with rheumatic and musculoskeletal diseases in Europe being empowered to lead full and independent lives.
Young PARE is a working group of the EULAR Standing Committee of PARE. Young PARE aims to improve the quality of life of young people, 18 to 35 years old, with 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. In 2014, when Young PARE was established, the group formulated eight strategic objectives, which emerged from a European research project commissioned by the EULAR Standing Committee of PARE:
- By 2020, national youth leaders are integrated into EULAR, especially the EULAR standing committee of PARE.
- By 2020, there is more awareness in society of the specific needs of young people with RMDs.
- 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.
- By 2020, educational institutions across Europe are more flexible and assistive in supporting high quality education of young people with RMDs.
- By 2020, employers and other stakeholders are more aware of the needs of young people with RMDs and that they receive more support to find a suitable job.
- By 2020, Young PARE campaigns for societal changes that make the world more inclusive for young people with RMDs.
- By 2020, every European country has an active national youth group for young people with RMDs.
- By 2020, PARE has established an active European network of national youth groups called Young PARE.
These objectives are bold – and very ambitious. Nevertheless, these are what we, as a community, strive to achieve, in order to make life better for people living with RMDs. The change the future conference was part of our objective to establish an active European network of national youth groups.
The 2nd EULAR Young PARE conference, ‘change the future’
Over 30 individuals from around Europe travelled to Retie in Belgium, on Friday 21st October 2016 to get involved in changing the future. It was truly wonderful to bring together such a diverse group of individuals, each with their own lived experiences of living with, or caring for someone with an RMD. The fact that every person in attendance is now using their own experiences to make life better for others truly inspires me. Whether that be through volunteering, working as an employee of a patient organisation, or through advocacy and health activism, each person is doing everything in their power to help others.
By combining social activities, networking opportunities, and skills-development workshops, this conference was a productive and useful experience for all. Across the weekend, three skills-based workshops were delivered around pitching ideas, organising and chairing meetings, and working with volunteers. Six walk-in workshops were also planned, enabling individuals to develop skills that would add value to their work. These included: (i) writing scientific abstracts; (ii) using the knowledge transfer programme; (iii) designing post presentations and online graphics; (iv) using social media in a healthcare setting; (v) using the virtual knowledge centre for sharing best practices; and (vi) writing effective articles for website and print media. I was delighted to facilitate the social media walk-in workshop, which provided an overview of social media, and how organisations should develop a digital marketing strategy to best address the needs and preferences of their target audience. We also talked about increasing efficiency, by using freely available social media management software, such as Hootsuite. If you’re interested in using social media, you may find my introductory guide to social media and one page digital strategy template helpful. Talking of social media, we were very active on Twitter, Facebook and Instagram throughout the conference. Thanks to everyone for sharing their thoughts, stories and photographs. Click here to check out our storify – you’ll feel like you were with us!
We also allocated time for digital poster presentations, where each individual presented an elevator pitch about the work their patient organisation has been doing in their respective country for young people with RMDs. I found this part of the conference hugely interesting, just to see the variety of exciting projects taking place around Europe. From national awareness campaigns, to individuals setting up youth groups, I feel that everyone gained something out of this session – I know I certainly did. In a world where we are increasingly connected, we must work collaboratively and learn from others who have done work before us, so as to not reinvent the wheel. It just makes sense.
Alone, we can do so little. Together we can do so much.
I came away with a renewed motivation to help people living with RMDs, and other health conditions, through my own research and advocacy work. By sharing our experiences, recognising each other’s expertise, and by working together, in true collaboration, we can achieve so much. Bit by bit, we are changing the future, for the better.