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Description
EULAR PARE Podcast, where we discuss topics of interest to the PARE community as well as to people living with rheumatic and musculoskeletal diseases.
27 Episodes
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Join us on the Young PARE Podcast as our host, Tanita-Christina Wilhelmer, delves into a captivating discussion with guest Caroline Kirsten. Together, they explore the distinctive challenges encountered by those living with Rheumatic and Musculoskeletal diseases (RMDs) when travelling and living abroad. Tune in for invaluable insights and expert tips on navigating journeys abroad while living with an RMD.
In celebration of World Arthritis Day 2023, Young PARE is hosting a podcast on the topic "Living with an RMD at all stages of life". Our host, Tanita-Christina Wilhelmer, asks participants about their personal experiences living with an RMD and how their diagnosis has affected their lives. Listen to their inspirational stories and helpful tips on coping with a new diagnosis.
In the third Young PARE podcast episode, Tanita-Christina Wilhelmer discusses with Sladjana Rumpl Tunjic different paths to fulfilling professional careers. How do you manage your RMD when working full-time? Why is it sometimes not possible to work 100%? How can you find a work-life balance? And why is it important to ask for help?
In the second Young PARE podcast, Caroline Kirsten and Ilaria Bini discuss with host Tanita-Christina Wilhelmer the body image while coping with RMDs, and how it influences various relationships, friendships and intimacy. How are tattoos connected with RMDs? Find out in this episode!
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.
Former EULAR President Johannes Bijlsma discusses the history and evolution of one of EULAR’s most important activities in the area of advocacy - the EULAR 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.
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