Rare diseases have one thing in common: only a few people are really familiar with the symptoms and possible treatment options. Three different podcasts now take you into the exciting world of neuroimmunology and the care situation of rare diseases.
In the podcast “Let’s talk Neuro: The Podcast on Neuroimmunology”, various aspects of the rare neuroimmunological diseases myasthenia gravis (MG) and neuromyelitis optica spectrum disorders (NMOSD) are highlighted. Prof. Dr. med. Martin Grond, Medical Director and Head Physician of Neurology at the Siegen District Hospital, interviewed experts on topics such as the possibilities and limitations of digitization in everyday neurological care and the psychological stress that can accompany myasthenia gravis. Five episodes have been released so far. The change4RARE initiative aims to pool knowledge about rare disease care as a whole and make it accessible. In the accompanying podcast, Prof. Dr. Dr. Christian Dierks, lawyer and medical specialist, conducts eight conversations with experts on the topic of “Access – economic limits and justice in the care of patients with rare diseases.” The topic will be examined from different perspectives: law, the Association of Statutory Health Insurance Physicians, drug manufacturers, ethics, patients, medical science, health insurance companies or health economics. As with many other rare diseases, the road to diagnosis in hypophosphatasia (HPP) can be an odyssey for the patient. Therefore, the diagnosis and differential diagnosis of HPP as well as current treatment options are the topics of this podcast. Prof. Dr. med. Uwe Maus, senior physician for arthroplasty and osteology and specialist for orthopedics and trauma surgery at the University Hospital Düsseldorf, sheds light on this rare disease from an orthopedic trauma surgery perspective.
The podcasts can be accessed at:
www.alexion.de/service/podcasts
Source: Alexion Pharma Germany GmbH
InFo NEUROLOGY & PSYCHIATRY 2021; 19(4): 33.
