Today is Rare Disease Day. And although you may think that these are not very common, more than 1 million people in the Netherlands deal with such a rare disease every day. Treatments are often unaffordable, or there is simply too little knowledge about a disease. As a result, there is often little perspective for patients, while things can be done differently. In this podcast, Stephan talks to Cor Oosterwijk, director of the patient umbrella organization for rare and genetic disorders VSOP, and Aleksandra Leijenhorst, mother of two children with a rare muscle disease and has her own foundation, the SpierKracht foundation.
