The Profcast - rare diseases and their therapies
For this purpose, Prof. Matthias P. Schönermark, M.D., Ph.D., managing director of SKC, speaks with patient representatives, payers, clinicians and scientists as well as industry representatives and also focuses on specific diseases. The word "Profcast" is a reference to professionals or professors, whom he welcomes as his guests.
The ambition behind this is to give an appropriate space to rare diseases and their treatment sine ira et studio. After all, the motto of the Rare Disease Day states it so aptly: "Rare is many". It is estimated that 4 million people in Germany and 300 million people worldwide are affected by a rare disease.
Overview of all episodes
In keeping with the Rare Disease Day, which traditionally takes place on the last day of February, the Profcast is published on the last day of a month.
#08 What motivates the World Orphan Drug Congress Europe 2022?
„Strategy, advocacy and partnering for the orphan drug industry" – this was the slogan of the World Orphan Drug Congress Europe, which was held from November 14th to 17th, 2022. In our podcast series "Profcast - rare diseases and their therapies", Prof. Matthias P. Schönermark M.D., Ph.D. reports on the three dominant topics incentive systems, harmonization of European HTA processes, and affordability. He also conducts live interviews with Matthias Heck, director of global government affairs at Alexion Pharmaceuticals, and Adam Plich, founder and CEO of Avanzanite Bioscience. You can find Profcast #08 What motivates the World Orphan Drug Congress Europe 2022? in German language on Spotify and Apple Podcast. Listen in now!
#07 Outreach Nurse - a profession far too rare
Rebekka Drägerdt is a pediatric nurse and outreach nurse at the children's and youth hospital AUF DER BULT in Hannover. In our podcast series Profcast "Rare diseases and their therapies", she explains why her profession is a rather rare one and discusses with Prof. Matthias P. Schönermark, M.D., Ph.D. how she supports the complex care of children with the rare skin diseases epidermolysis bullosa and congenital ichthyosis. You can find Profcast #07 Outreach Nurse - a profession far too rare on Spotify and Apple Podcast (in German language only). Listen now!
#06 Rapid diagnosis through artificial intelligence
Dr. Jama Nateqi is founder and CEO of Symptoma, the world's largest symptom checker. Symptoma's artificial intelligence (AI) is designed to fulfill the vision of providing the right diagnosis and treatment for every patient. Prof. Matthias P. Schönermark talks to him about accuracy, diagnostics, real world data and the AI algorithm in our Profcast. You can find Profcast #06 Rapid diagnosis through artificial intelligence on Spotify and Apple Podcast (in German language only). Listen now!
#05 The rare revolution rolls
Both founders of the Rare Revolution Magazine, Rebecca Stewart (CEO) and Nicola Miller (editor-in-chief), are the guests of the fifth profcast edition "the rare revolution rolls". Their magazine is the most important periodical for the rare disease community. Prof. Matthias P. Schönermark, M.D., Ph.D. discusses with the two co-founders their motivation and goals, their (often personal) challenges when writing stories of rare diseases and the value of the rare youth revolution. You can find the Profcast #05 The rare revolution rolls - this time in Englisch language - on Spotify and Apple Podcast. Listen now!
#04 Centers - big impact, small funding
Prof. Dr. Helge Hebestreit is deputy clinical director of the University Hospital Würzburg and head of the Center for Rare Diseases (ZESE), Reference Center Northern Bavaria in Würzburg. In podcast episode #04 Centers - big impact, small funding, he discusses with Prof. Schönermark the Bavarian, German and European organization and funding of centers for rare diseases and the benefits they create for patients and their families, especially in the context of case conferences and clinical trials. You can find the Profcast #04 Centers - big impact, small funding in German language on Spotify and Apple Podcast. Listen now!
#03 The voice of rare disease patients
Dr. Christine Mundlos is vice executive director of the German Alliance of Chronic Rare Diseases ( Allianz Chronischer Seltener Erkrankungen, ACHSE e.V.) and acts as the voice for patients with rare diseases in the umbrella organization of more than 130 patient self-help organizations. In podcast episode #03 The voice of rare disease patients, she discusses with Prof. Schönermark how ACHSE enables patients to help themselves, how physicians can receive rare disease consultations at ACHSE, how Germany can learn from Europe, and how a structured patient pathway and artificial intelligence will improve the future of rare diseases. You can find Profcast #03 The voice of rare disease patients in German language on Spotify and Apple Podcast. Listen now!
#02 Orphan Drugs – more than a cost factor
Dr. Kai Joachimsen, chief executive officer of the German Pharmaceutical Industry Association, is the second guest in our SKC-podcast "Der Profcast - rare diseases and their therapies". In podcast episode #02 Orphan Drugs - more than a cost factor, Prof. Dr. Matthias P. Schönermark, and Dr. Kai Joachimsen shed light on the measures initiated to advance the development of orphan drugs over the last 20 years, the changes that the current political discussion could involve, and how the future of orphans is shaping up, especially in light of digitalization. You can find the Profcast #02 Orphan Drugs – mehr als ein Kostenfaktor in German language on Spotify and Apple Podcast. Listen now!
#01 Geniale Mutausbrüche
In the first edition of our SKC podcast, Prof. Dr. Hagen Pfundner, CEO of Roche Pharma AG, is our guest. Prof. Matthias P. Schönermark, M.D., Ph.D. and he speak about scientific and technological leaps in rare diseases, unusual paths of orphan drugs at the pharmaceutical giant Roche, why orphanization is a dirty word and which potentials molecular genetic diagnostics hold. You can find the SKC podcast Profcast #01 Geniale Mutausbrüche in German language on Spotify and Apple Podcast. Listen now!
Produced by SKC consulting. We are the market access special forces.