EULAR PARE
27 episodes - English - Latest episode: 3 months ago -EULAR PARE Podcast, where we discuss topics of interest to the PARE community as well as to people living with rheumatic and musculoskeletal diseases.
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Episodes
Young PARE Podcast - Travelling and living abroad with RMDs
February 12, 2024 15:00 - 22 minutes - 15.8 MBJoin 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.
Young PARE Podcast - World Arthritis Day 2023: 'Living with an RMD at all stages of life'
October 12, 2023 04:00 - 37 minutes - 25.5 MBIn 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.
Young PARE Podcast - Building a professional career while having an RMD
August 31, 2023 05:00 - 31 minutes - 21.7 MBIn 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?
Young PARE Podcast - Body image and RMDs
June 13, 2023 07:00 - 29 minutes - 20.6 MBIn 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!
Meet the EULAR PARE Outstanding Award Winner 2023 Dieter Wiek from Germany
May 09, 2023 08:00 - 22 minutes - 15.7 MBThis 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.
Young PARE Podcast - Growing up with an RMD
May 09, 2023 07:00 - 34 minutes - 24.1 MBThis 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.
Meet a PARE Best Practice winner - Axial Spondyloarthritis Association of South Africa
April 04, 2023 13:00 - 16 minutes - 11 MBThis 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 Pra...
How to create a programme for patient education after diagnosis
September 26, 2022 13:00 - 16 minutes - 11.5 MBLene 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.
Celebrating EULAR's 75th Anniversary!
May 27, 2022 08:00 - 33 minutes - 23.1 MBEULAR 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!
Patient representatives at the EULAR Congress: experiences and expectations
May 27, 2022 06:00 - 8 minutes - 5.84 MBSimon 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.
Why and how to implement peer-mentoring programmes
May 17, 2022 13:00 - 12 minutes - 8.93 MBNele 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.
Meet our collaborators - EURORDIS
April 26, 2022 13:00 - 21 minutes - 14.8 MBThis 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.
Meet a PARE Best Practice Fair winner - NRAS
February 14, 2022 07:00 - 19 minutes - 13.6 MBAilsa 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.
Meet a PARE Best Practice Fair winner - ASIF
January 25, 2022 14:00 - 24 minutes - 16.6 MBJo 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.
Meet our members - Arthritis Ireland
November 24, 2021 06:00 - 26 minutes - 17.9 MBThis 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.
Get to know EU-OSHA's Lighten the Load campaign!
October 12, 2021 07:00 - 32 minutes - 22.1 MBSarah 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.
People with RMDs in the workplace: challenges and recommendations
October 12, 2021 07:00 - 17 minutes - 12.2 MBLoreto 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.
EULAR Campaign: How Did It All Start?
October 10, 2021 08:00 - 15 minutes - 10.9 MBFormer 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.
EULAR Campaign: experiences from the PARE members
October 10, 2021 07:00 - 39 minutes - 27.4 MBMarios 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.
Why do we celebrate World Arthritis Day?
October 03, 2021 08:00 - 19 minutes - 13.3 MBRepresentatives 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.
Why and how to set up a national Patient Research Partner network
September 06, 2021 08:00 - 23 minutes - 16.1 MBPatricia 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.
Volunteering with EULAR PARE
August 02, 2021 08:00 - 15 minutes - 10.9 MBJeanette 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.
Meet the new EULAR President!
July 15, 2021 17:00 - 24 minutes - 17.1 MBAnnamaria Iagnocco shares her vision and plans for EULAR as the new EULAR President, focusing especially on topics related to PARE and the patient community.
Meet the 2020 Stene Prize winner!
May 13, 2021 07:00 - 13 minutes - 9.32 MBHristina Bankova from Bulgaria shares her experience of participating in and winning the Stene Prize competition, also focusing on the overall essay topic of volunteering.
What does the EULAR Congress mean to the PARE members?
May 12, 2021 07:00 - 18 minutes - 12.6 MBRepresentatives 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.
Visions for the future of PARE
May 11, 2021 07:00 - 11 minutes - 8.02 MBSouzi Makri shares her vision and key projects for the future of PARE as the next Chair of the EULAR PARE Committee.
PARE at the EULAR 2021
May 10, 2021 09:00 - 22 minutes - 15.1 MBDieter 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.