For this episode of Karger’s The Waiting Room Podcast, we spoke with cancer survivor and patient advocate Naniki Seboni about her experiences of being diagnosed with stage 3 malignant melanoma at the age of 25. We also discussed what should be done regarding prevention, screening and awareness of skin cancer – not only in her native country of South Africa, via the Cancer Association of South Africa (CANSA), but also in the rest of the world. Please note that Skin Cancer Awareness Month is held in May each year. For more podcast episodes from Karger visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Jessica Settle about her experience of being diagnosed with colorectal cancer at the age of 28. Jessica is the dedicated mother of a 12-year-old daughter. She is advocating for colon cancer awareness and spreading hope wherever she goes. Please note that Colorectal Cancer Awareness Month is held in March each year. Published in February 2024, Karger’s latest patients’ resource on colorectal cancer is freely available here. For more podcast episodes from Karger visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Emily Lewis about Rare Disease Day on February 29, and how artificial intelligence (AI) and digital technologies could help patients living with a rare disease. Emily (Kunka) Lewis, MS, CCRP, CHES is an opinion leader in the digital transformation of healthcare. She is driven by a desire for the democratization of modern medicine. Emily received a Master of Science in Clinical Research from Northwestern University. She is currently working as a Digital Transformation Project Lead at UCB. For more podcast episodes from Karger visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Bernie Price about her patient journey, her experiences after a gynecological cancer and hysterectomy, as well as the healthcare system as such. Bernie is an endometrial cancer survivor. She is a Transformational Mindset and Life coach, Tai Chi instructor and athlete. Furthermore, she serves as an advocate for women going through menopause. The booklet “Fast Facts for Patients: Sexual and Reproductive Health After Gynaecological Cancer” mentioned in the podcast episode can be downloaded online free of charge. For more podcast episodes from Karger visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Claudia Louati about the revision of the EU’s pharmaceutical legislation. Claudia Louati joined the European Patients’ Forum (EPF) as Head of Policy in May 2023. She leads EPF’s policy and advocacy work and steers EPF’s engagement with EU and international stakeholders on key policy issues. Before joining EPF, she worked at the Europe Office of the U.S. Food and Drug Administration in Brussels, where she promoted EU–U.S. regulatory collaboration on medical products. Claudia holds two master’s degrees in European Affairs from SciencesPo Paris and the London School of Economics. For more podcast episodes from Karger visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Charlie Bethel about men’s mental health in the context of Movember. The awareness month focuses, among prostate cancer and testicular cancer, on mental health and suicide prevention. Charlie is the Chief Officer of the UK Men’s Sheds Association (UKMSA) whose mission is “Healthy and Happy Men”. He has studied Industrial Design at university and worked in the third sector for over 20 years before joining UKMSA in the summer of 2018. Focused on acquiring and developing resources for the organization, his tasks combine three of his passions: organizational growth, increasing wellbeing and his love of craft and design. This podcast mentions suicide and suicidal ideation, and some people might find it disturbing. If you feel you need support, please contact your local crisis center. For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr José Cândido Caldeira Xavier-Júnior, who is a pathologist. Pathology is a kind of invisible field in medicine. It happens behind closed doors – in the laboratory and in the morgue. Mostly, pathologists are depicted as the ones who determine cause of death. However, this is only one side of the coin! A not so well-known fact is that pathologists are indispensable in helping clinicians to diagnose a condition and to decide on the best cure, especially in cancer. On the role of a pathologist, Dr José Cândido Caldeira Xavier-Júnior also wrote three blog posts for The Waiting Room blog which you find here: ·           The Role of a Pathologist in Diagnosis and Treatment: What Does a Pathologist Do in General? ·           The Role of a Pathologist in Diagnosis and Treatment: What Does a Pathology Report Contain? ·           The Role of a Pathologist in Diagnosis and Treatment: Pathology Is a Varied Medical Field For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr Erik Briers, MS PhD about current screening and testing modalities, as well as mental health and quality of life in connection with prostate cancer. Erik is both an Expert Patient Advocate, member of the European Association of Urology (EAU) prostate cancer guidelines committee and the Vice-Chair of the European Prostate Cancer Coalition, i.e. Europa Uomo – The Voice of Men with Prostate Cancer in Europe. He has a PhD in Chemistry from the University of Leuven, Belgium, and was CEO of a biotech company. His strong social involvement within patient organisations began after his own prostate cancer diagnosis in 2001. For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Elisa Martini and Helen Crawford from the International Federation of Psoriasis Associations (IFPA) about the skin condition psoriasis and the upcoming Psoriasis Action Month in August. Elisa Martini is the Policy and Advocacy Manager of the International Federation of Psoriasis Associations (IFPA) and is thus responsible for developing and implementing IFPA’s advocacy and policy strategies at a global level. She has a Master’s degree in pharmaceutical sciences and a Ph.D. with a focus on psoriasis. Helen Crawford is both a Board Member of the International Federation of Psoriasis Associations (IFPA) and Programs Manager at the Canadian Association of Psoriasis Patients. She is committed to patient engagement and has participated in several patient advisory boards. Furthermore, she has a degree in Linguistics from Carleton University and a Certificate in Social Media from Algonquin College. The IFPA works on behalf of 125 million people living with psoriasis and/or psoriatic arthritis. For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Nomsa Mtshali, Patient Community and Rare Assist Manager at Rare Diseases South Africa. Rare Diseases South Africa is a non-profit organization which aims to assist rare disease patients in receiving access to life-saving treatment and supportive care for improved quality of life. The Rare Bear Project is a community upliftment program under Rare Diseases South Africa. For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Professor Antonio Piga about thalassemia, which is an inherited blood disorder, and one of the two main types called beta thalassemia in particular. Professor Piga is Professor of Pediatrics at the University of Turin, Italy. Furthermore, he is the author of the recently published Fast Facts for Patients booklet “Beta Thalassemia”, which is freely available online.  For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Anca Toma about the 20th anniversary of the European Patients’ Forum (EPF) and its future goals.  Anca Toma joined the EPF as Executive Director in March 2022. She has over 15 years of experience in European health policy, working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns. The EPF is the leading voice of patient organizations in Europe. 20 years after its founding, EPF occupies a unique position as the only cross-disease umbrella patient organization at the European level. For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke again with Dr Anne-Marie Baird, who currently serves as the president of Lung Cancer Europe (LuCE). She is a Senior Research Fellow at Trinity College Dublin, Ireland, and a patient advocate. In this episode we are going to focus on non-small cell lung cancer, genetic predisposition, biomarkers and treatment. More information on lung cancer is freely available here: Fast Facts for Patients: Non-small Cell Lung Cancer with KRAS MutationInfographic Summary Sheets for Patients: KRAS G12C in Metastatic Non-Small Cell Lung Cancer When Checkpoint Inhibitor Therapy Stops Working Biomarkers in Metastatic Non-Small Cell Lung Cancer “Anyone with Lungs Can Get Lung Cancer”: An Interview with Dr Anne-Marie Baird (Lung Cancer Europe)   For more podcast episodes from Karger please visit https://www.karger.com/pages/podcasts.

For this episode of Karger’s The Waiting Room Podcast on World IBD Day on May 19, we spoke with Jen Rose, who was diagnosed with inflammatory bowel disease (IBD) 33 years ago. She offers emotional support to newly diagnosed IBD patients and their families and is the author of the coloring journal “Me (and IBD)”. In the second episode of our two-part special we talk about the creation of “Me (and IBD)” and Jen’s plans for future updates and add-ons. In addition, we are looking at the aspect of mental health and what it takes to become a powerful patient. More information on IBD is freely available here: ·     Infographic Summary Sheets for Patients: What Is IBD? ·     Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease For more podcast episodes from Karger please visit karger.com/podcasts

For this episode of Karger’s The Waiting Room Podcast on World IBD Day on May 19, we spoke with Jen Rose, who was diagnosed with inflammatory bowel disease (IBD) 33 years ago. She offers emotional support to newly diagnosed IBD patients and their families and is the author of the coloring journal “Me (and IBD)”. In the first episode of our two-part special we focus on what IBD is, what to look out for in terms of symptoms and diagnosis, and what it is like to live with the condition based on Jen’s patient journey. The second part of the interview will be published on May 18, 2023. More information on IBD is freely available here: ·     Infographic Summary Sheets for Patients: What Is IBD? ·     Fast Facts for Patients and their Supporters: Inflammatory Bowel Disease For more podcast episodes from Karger please visit karger.com/podcasts.

For this episode of Karger’s The Waiting Room Podcast for World Melanoma Day on May 1, 2023, as well as Skin Cancer Awareness Month in May, we spoke with Prof Willie Visser about the importance of skin cancer prevention and regular check-ups with your dermatologist. Prof Visser is the Head of Dermatology at University of Stellenbosch, Tygerberg Academic Hospital, Cape Town, South Africa. An Infographic Summary Sheet for Patients on skin cancer, self-examination and prevention is freely available here. For more podcast episodes from Karger please visit Podcasts Overview - Karger Publishers

For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer. This is the second part of our two-part special on colorectal cancer. The first part was published on March 9, 2023. For more podcast episodes from Karger visit karger.com/podcasts.

For this episode of Karger’s The Waiting Room Podcast on Colorectal Cancer Awareness Month in March, we spoke with Stephen Rowley. He is a colorectal cancer survivor, and currently serves as Patient Advisor at Digestive Cancers Europe. In our interview we focus on the aspects of prevention and screening, stigmatization, and cancer rehabilitation regarding colorectal cancer. This is the first part of our two-part special on colorectal cancer. The second part will be published on March 23, 2023. For more podcast episodes from Karger visit karger.com/podcasts.

For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr Anne-Marie Baird, who currently serves as the president of Lung Cancer Europe (LuCE). She is a Senior Research Fellow at Trinity College Dublin, Ireland, and a patient advocate. LuCE is the voice of Europeans impacted by lung cancer. The aim of LuCE is to destigmatise the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes. For more podcast episodes from Karger visit karger.com/podcasts.

For this episode of Karger’s The Waiting Room Podcast on Rare Disease Day 2023, which is held on February 28, we spoke with Lisa Sarfaty from the National Organization for Rare Disorders (NORD). Lisa currently serves as the Vice President of Community Engagement, and particularly focuses on advocacy, education, and capacity building. While addressing the 40th anniversary of the Orphan Drug Act (ODA) and of the foundation of NORD as an organization, we specifically tried to answer the question: “What does equity mean for people living with a rare disease?” We also looked at what should be done to actually achieve this equity in education, the workplace, and everyday life. Last but not least, we had a closer look at NORD’s plans for Rare Disease Day 2023. For more podcast episodes from Karger visit karger.com/podcasts.