Episode 16: Rare are many - Insights into rare diseases

Our podcast series YOU ASK we explain - Berührungsängste in der Medizin started in 2023 and is published monthly. In our 16th episode, we focus on the topic: Rare are many - insights into rare diseases. We were guests on Rare Disease Day at the Programmkino Ost to accompany an exciting panel discussion - organized by the University Center for Rare Diseases (USE) at the University Hospital Carl Gustav Carus Dresden.

Join us for insights into therapies, medical expertise, personal fates and biographies of those affected. As always, live with experts, empathetic, well-researched, sensitive to discourse and entertaining. Listen to our podcast on the go - on Spotify, Apple Music or Deezer.

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In this episode, you can listen to two different discussion panels, hosted by experienced radio presenter Thomas Lopau.

Our Referees:

Part 1:

• Marcel Welk - Affected person with myasthenia gravis
• Dr. Jochen Schäfer - Senior Physician for Neurology, Clinic and Polyclinic for Neurology, University Hospital Carl Gustav Carus Dresden
• Dr. Christina Mundlos - Deputy Managing Director and Medical Pilot Alliance of Chronic Rare Diseases (ACHSE) e.V.
• Dr. med. Amalia-Mihaela Hanßke - Deputy Spokesperson of the USE, Senior Physician at the Clinic and Polyclinic for Psychotherapy and Psychosomatics, University Hospital Carl Gustav Carus Dresden
• Dr. Michael Schöttler - Head of Neurodegenerative and Rare Diseases, Roche Pharma AG

Part 2:

• Andrea Maier-Neuner - Managing Director Patient Organization for Congenital Immunodeficiencies dsai e.V.
• Dr. med. Ulrike Reuner - Senior physician for neurology/psychiatry/psychotherapy, palliative care physician, Clinic and Polyclinic for Neurology, University Hospital Carl Gustav Carus Dresden
• Ronny Krappmann - orphaned father, Ambassador of the European Association against Leukodystrophies ELA e.V.
• Dr. med. Katja Storch - Senior physician, neuropaediatrician, Klinik Bavaria Kreischa
• Dr. Michael Schöttler - Head of Neurodegenerative and Rare Diseases, Roche Pharma AG

Musical accompaniment:

• Jo Aldinger jochenaldinger.de
• Patrick Neumann www.patrickneumann.net

This project is funded by the Federal Ministry of Education and Research (BMBF) and the Free State of Saxony as part of the Excellence Strategy of the Federal and State governments.