This episode features the EULAR PARE Outstanding Achievement Award winner 2023. EULAR PARE meets with Dieter Wiek from Germany, who is the first person to be awarded with this important recognition for his outstanding work for EULAR and commitment as a volunteer for more than a decade. An inspiration to all volunteers.
This episode features a brand new Young PARE Podcast series focusing on young people living with RMDs. Sophia Marantidou from Greece and Giovanni Mascarino from Italy, who both received the RMD diagnosis in their childhood, discuss with our host Tanita-Christina Wilhelmer growing up with an RMD.
This episode features a new series within the EULAR PARE Podcast where EULAR PARE meets with representatives of RMD patient organisations outside of Europe. We start with South Africa and the African continent in general, where we will hear from Maranda van Dam, Chairperson of the Axial Spondyloarthritis Association of South Africa, what challenges people with RMDs are facing and what patient organisations are doing to improve their quality of life. Maranda`s initiative won the PARE Best Practice Award at the EULAR PARE Conference 2022.
Lene Mandrup Thomsen (Danish Rheumatism Association) and Jeanette Andersen (Lupus Denmark) discuss how their organisations have created a programme for patient education after diagnosis called “Know Your Lupus” and how this has helped patients manage their disease.
EULAR Past-President, Iain McInnes, and EULAR PARE Vice President, Elsa Mateus, discuss EULAR's biggest achievements over the years, and what we can expect for the future of rheumatology and the organisation, in this very special episode celebrating a momentous occasion - EULAR's 75th Anniversary!
Simon Stones (patient advocate from the UK) and Alice Grosjean (Swiss League Against Rheumatism) discuss the meaning and importance of the EULAR Congress to the PARE member organisations but also to the patient representatives themselves.
Nele Caeyers and Diederik De Cock from Belgium's patient organisation ReumaNet talk about peer mentoring: what is it, how ReumaNet has implemented peer mentoring programmes in their country, as well as some lessons learned from this experience.
This episode initiates a new series within the EULAR PARE Podcast where we aim to get to know the European organisations that collaborate with EULAR PARE a little better. Simona Bellagambi and Ilaria Galetti from EURORDIS share its history, connection to EULAR PARE and the excellent work that they do for people with rare diseases in Europe, including people with RMDs.
Ailsa Bosworth from the UK’s National Rheumatoid Arthritis Society talks about SMILE-RA, a project on self-management e-learning for people with RA, which was also one of the winners of the Best Practice Fair at the EULAR PARE Conference.
Jo Lowe and Jo Davies from the Axial Spondyloarthritis International Federation (ASIF) talk about their project on the delay to diagnosis that people with axial spondyloarthritis often face, which was also one of the winners of the Best Practice Fair at the EULAR PARE Conference.
This episode initiates a new series within the EULAR PARE Podcast where we aim to get to know the EULAR PARE member organisations a little better. Brian Lynch and Peter Boyd from Arthritis Ireland share its history, connection to EULAR PARE and the excellent work that they do at a national level for people with RMDs.
Loreto Carmona, Chair of the EULAR Advocacy Committee, and Suzanne Verstappen, Convenor of the EULAR Task Force on work, talk about the challenges for people with RMDs in the workplace and the EULAR Points to Consider to support people with RMDs to participate in healthy and sustainable work.
Sarah Copsey from the European Agency for Safety and Health at Work (EU-OSHA) shares information about the work of this organisation as well as its Lighten the Load campaign.
Marios Kouloumas from the Cyprus League Against Rheumatism and Clare Jacklin from the UK’s National Rheumatoid Arthritis Society discuss the PARE member organisations’ experiences and opportunities in engaging with the EULAR Campaign.
Representatives from PARE members - Boryana Boteva from the Bulgarian Organisation for Patients with Rheumatic Diseases and Ana Vieira from the Portuguese League Against Rheumatism - talk about the meaning and importance of World Arthritis Day, and why it's important to make noise around RMDs.
Patricia Pennings and Petra Borsje from Reumazorg Nederland, the PARE member organisation from the Netherlands, talk about their work, establishing and coordinating a national Patient Research Partners network.
Jeanette Andersen, leader of the PARE Editorial Board and Elsa Mateus, EULAR Vice President representing PARE, share their experiences as well as the opportunities and new developments in volunteering for EULAR PARE.
Representatives from PARE members - Petra Balazova from the Slovak League Against Rheumatism and Connie Ziegler from the Danish Rheumatism Association - share information about their organisations' participation at the EULAR Congress as well as what is the importance and meaning of the Congress to them.
Dieter Wiek, EULAR VP representing PARE, and Elsa Mateus, Chair of the EULAR PARE Committee, present the PARE programme at the EULAR 2021 Congress and invite the PARE community to join in, while also discussing insights about the evolution of the PARE presence at EULAR Congresses over time.