This year’s EULAR Annual European Conference of PARE will be held in Prague, Czech Republic between Friday 05 and Sunday 07 April 2019, with networking and welcome events taking place on Thursday 04 April 2019. The 2019 theme focuses on further implementation of the ‘Don’t Delay, Connect Today’ campaign, by focusing on work. The long-term aim is to enhance work opportunities and experiences for people with rheumatic and musculoskeletal diseases (RMDs).

This will be my fifth EULAR Annual European Conference of PARE that I have attended – and it remains one of the conferences that I always look forward to the most. I love that the conference is led for and by the patient and carer community through stimulating discussion, enabling collaboration, and empowering everyone in attendance to return to their respective countries to implement change for the better. While those of us in the know are familiar with the structures and acronyms, others aren’t – so here is a little background to EULAR, what PARE stands for, and a bit more about the conference – and how you can join in this year, even if you’re not attending in person!

The European League Against Rheumatism (EULAR)

The European League Against Rheumatism (EULAR) is an international organisation which represents people with arthritis/rheumatism, healthcare professionals and scientific societies of rheumatology across Europe, and beyond. The aims of EULAR are to reduce the burden of rheumatic and musculoskeletal diseases (RMDs) on individuals and society, and to improve the treatment, prevention and rehabilitation of RMDs.

EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with RMDs by European governing bodies.

The EULAR Structure

EULAR is a pan-European organisation fostering a multitude of activities in areas of research, patient care, and education. To manage and promote its goals effectively, EULAR has a structure of committees and managerial bodies to help oversee and deliver work on a national and international level.

The General Assembly is the highest authority of EULAR. It is composed of both member organisations, corporate members and the members of the Executive Committee. The General Assembly meets once a year on the occasion of the Annual European Congress of Rheumatology.

The Executive Committee is the managing body of EULAR and deals with scientific, educational, administrative, financial and organisational matters. Members, elected by the delegates at the EULAR General Assembly, serve for two to four years and meet three times a year.

The Scientific Programme Committee is responsible for the scientific and educational content of the annual congress and the organisation of all related sessions. This also includes PARE (People with Arthritis/Rheumatism in Europe) and healthcare professional sessions, prepared by dedicated working groups in the PARE and Healthcare Professional Standing Committees.

The EULAR Standing Committees are set up to manage and perform the various activities of EULAR on behalf of the Executive Committee. Currently, eight standing committees are in place, covering the major areas of activity of EULAR. These include:

  • Standing Committee for Clinical Affairs;
  • Standing Committee on Education and Training;
  • Standing Committee on Epidemiology and Health Services Research;
  • Standing Committee of Health Professionals in Rheumatology;
  • Standing Committee on Investigative Rheumatology;
  • Standing Committee on Musculoskeletal Imaging;
  • Standing Committee on Paediatric Rheumatology;
  • Standing Committee of People with Arthritis/Rheumatism in Europe (PARE).

The EULAR Secretariat, located in Kilchberg, Switzerland, fulfils many functions: in addition to serving EULAR’s member organisations and its Executive Committee, the Secretariat’s main functions are to run the growing education programme and activities that EULAR delivers each year.

The Standing Committee of PARE

The EULAR Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) unites representatives of RMD patient and carer groups around Europe to work together towards improving the quality of life for the 120 million people in Europe living with these conditions. The national organisations of people with RMDs across Europe work together via the EULAR Standing Committee of PARE, whose vision is for people with RMDs in Europe to be empowered to lead full and independent lives.

The primary aims of PARE are to:

  • Develop strong networks of effective, user-led organisations of people with RMDs;
  • Ensure the voice of people with RMDs is heard and has influence among decision makers within Europe;
  • Create powerful alliances that will make a difference to the lives of people with RMDs.

To achieve these aims, the committee organises a range of high quality activities and programmes – one of which is the annual European conference of PARE. The Standing Committee of PARE is currently chaired by Nele Caeyers, who is supported by the PARE Board, which includes individuals elected from EULAR national member organisations, from organisations that have a co-opted individual in the Standing Committee of PARE, and ex-officio members (Chair, Vice President of EULAR, Vice President-elect/Past Vice President, and Chair-elect/Past Chair).

The current members of the PARE Board include:

  • Nele Caeyers, Chair of the Standing Committee of PARE, Belgium
  • Dieter Wiek, Vice President of EULAR representing PARE, Germany
  • Elsa Mateus, Chair-elect of the Standing Committee of PARE, Portugal
  • Petra Balazova, Chair of Young PARE, Slovakia (until April 2019)
  • Tanita Wilhelmer, Chair of Young PARE, Austria (from April 2019)
  • Boryana Boteva, Bulgaria
  • Kristijonas Mazuras, Lithuania
  • Polina Pchelnikova, Russia

Under the umbrella of the Standing Committee of PARE is Young PARE, a working group of eight young people with RMDs aged 18 to 35 (including me until April 2019), whose aim is to improve the quality of life for young people with RMDs across Europe by raising the profile of these conditions, and by cultivating an active network of individuals who work in European countries on behalf of young people with RMDs.

The EULAR Annual European Conference of PARE

The EULAR Annual European Conference of PARE (often abbreviated as the PARE Conference) is a EULAR-only network event and takes place once a year in or near a European city location. Each year, the conference is dedicated to a different topic, with keynote speakers, debates and workshops spanning the three days. The PARE Conference is led and delivered by patients and patient representatives, with meaningful collaboration with healthcare professionals and researchers in the design, preparation, delivery and evaluation of every aspect of the programme. Through a mixture of participatory workshops, plenary sessions and networking opportunities, delegates at this conference are able to learn so much more than conventional conferences, and this is reflected each year through the demonstration of high quality national activities which have taken place for people with RMDs. As well as being one of the best organised conferences out there, it is also the friendliest conference too! What I find incredibly moving, year on year, is the extremely close relationship that delegates make – it’s where colleagues become friends, with shared visions, and a commitment to making the world a better place. What an honour it is to be able to attend, and to share these few days with amazing, talented and inspirational individuals.

Young PARE are building on their first integrated youth meeting as part of the overall PARE Conference in 2018, and will be delivering a youth-led workshop for members of the Young PARE network on ‘transitions in life’, taking place on Thursday 04 April 2019, immediately before the conference. Young PARE are also hosting two workshops across the conference, which focus on finding the right job, and entitlements.

So without further ado, here’s a teaser about what is planned over the next few days from Dieter and Nele!

Join in – wherever you are!

Since 2014, the PARE conference has been live-streamed in places, and 2019 is no exception! From plenary sessions to three workshops, streaming will allow you to feel as though you’re in the room at #pare2019. The conference will be live-streamed on EULAR’s Facebook on Friday 05 April 2019 and Saturday 06 April 2019 from 9 am CET (8 am BST, UK time).

We will also be using social media throughout the conference! Please follow EULAREULAR Young PARE and EMEUNET on Twitter using the hashtag #pare2019. As always, you can follow updates from me on Twitter too at @SimonRStones.

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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