|The 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’.
The presentations and workshops at the PARE Conference were developed to inform, empower and motivate EULAR member organisations of PARE. The event was a dynamic opportunity for delegates to learn from experts and each other. The organisations represented were for those with rheumatic and musculoskeletal diseases (RMDs). Some attending were from long established and experienced organisations and others were more recently formed, but were equally keen with new ideas ready to flourish. All representatives were selected because each have an interest in developing one or more of the topics covered in the programme. The aim being to share what was learned and for those organisations to benefit from the information and contacts gathered at the PARE Conference.
A Young PARE workshop was underway on the first day, but apparently I did not quite make the age range criteria. The cheek of it ! Workshop leaders headed up the discussion on ‘Transitions in Life – Implications for Young People with RMDs.’
The Best Practice Fair
The LUPUS EUROPE Abstract
The LUPUS EUROPE Poster
i. the large majority of people experiencing symptoms that limit ability to carry out daily activities
Pictures bordered the display denoting the main lupus symptoms from joint pain, fatigue, organ involvement to headaches and hairloss. The target in the crosshair was shaped by more pictures of the lupus journey with medications, a body map of symptoms and European flags of all PAN members in the team. A central picture of an egg timer focused the concept of time being of the essence. The speeding up of the research process by patients being at the forefront from the inception of projects.
There were presentations, further welcomes and panel discussions by the Standing Committee, Young PARE and various Czech Rheumatological Associations. The presentations focused on the EULAR Strategic Goals 2018-2023 on Advocacy, that by 2023, EULAR’s activities and related advocacy will have increased participation in work by people with RMDs. This included the success demonstrated by research on ‘The Effect of Anti-TNF Therapy on Work Productivity and Activity Impairment in Patients with RA, AS and PsA over One Year – Real Life Data from the Czech Biologics Registry ATTRA from the Institute of Rheumatology in Prague’. In addition, the runner-up of the Edgar Stene Prize 2019, Francisco Carreira Roca gave an impassioned speech about his personal journey as a trained architect and then becoming wheelchair bound in his essay ‘My Ideal Employer – Work without barriers for people with RMDs: Work Right’.
Delegates with lupus attending PARE
At the close of events on Friday in the Plenary Room Dieter Wiek, Vice President of the PARE Standing Committee, made a request to the plenary on my behalf. He asked if any delegates attending with lupus would like to come together for a meet and greet with a photo call at the spectacular entrance of the Don Giovanni Hotel. We found there were seven of us attending from Sweden, Slovakia, Portugal, Poland, Belgium and the UK including the PARE President, the Chair of Young PARE, original and new PAN members, plus current and former LUPUS EUROPE Trustees.
A. Workshop: Working with Policy Makers, Employers and Trade Unions: a workshop to support the advocacy activities of PARE organisations at national and European levels
B. Workshop: Effectively Designing and Presenting a Poster
We created a dynamic title asking how researchers involve patients and carers. It had a flow of direction with circles highlighting the background, aims, methods, results and conclusions denoting many of the main points with diagrams. The conclusion was placed directly in the centre to focus attention with a smiley face to illustrate a positive outcome had been reached. There was even a QR code to keep a track of how many would be downloading the poster directly. In conclusion it was found it is not as easy as it looks, planning is key, having a clear brief is helpful, as is knowing your audience, teamwork is vital and there is no right or wrong way to design a poster.
C. Workshop: Working with Pharmaceutical Companies
D. Workshop: Occupational Rehabilitation: how can organisations of PARE support people with RMDs to work
E. Workshop: How to Care for Informal Carers’ Needs: what support can organisations of PARE offer ?
F. Workshop: Finding the Right Job at the Right Time (Young PARE)
G. Workshop: Entitlements and Knowing Your Rights at Work (Young PARE)
H. Workshop: The Value of Work: asking the right questions was also live streamed on the internet.
Sightseeing and Gala Dinner