De Volkskrant journalist wins prize for articles on rare diseases

The award was established by VSOP, the umbrella organization for patients for rare and genetic disorders. De Visser received the award – a bronze statue of an angel – on Tuesday evening at the Royal Netherlands Academy of Arts and Sciences building in Amsterdam.

Estimated in the Netherlands 6 to 8 percent of the population is a rare disease. These are cases that occur in less than one in two thousand people. “Patients with rare diseases often go through years of searching for a diagnosis,” the patients’ association wrote. “During that time, they often feel that they have not been taken seriously enough by their practitioners, who usually assume the average patient.”

The jury commends, among other things, that De Visser has an eye in her production for what it means to live with a rare disorder for patients and their loved ones, as well as for what scientific research and biomedical innovations can mean. It also does so “without raising false expectations”.

epidermolysis bullosa

Last year, de Visser wrote about Shivan Hassan, who fled Iraq with his family to the Netherlands in the early 1990s in search of medical treatment for a rare skin condition. The skin is so thin that sores and blisters develop. Hopefully, the new gene therapy will provide relief.

The jury also mentions the story of Arwen, a one-year-old boy who, after crowdfunding, managed to obtain the most expensive medicine in the world for a rare muscle disease. He passed away at the age of 3, but his loved ones cherish how he recovered after treatment. His mother said De Volkskrant. He learned to talk, we were able to communicate with him, friends came over, and we were about to check out the playgroup at the rehab center. We have memories of him that we never would have had before. He taught us to live with the seasons, he enjoyed nature so much.

Patients, relatives and caregivers

Patients (or their loved ones), healthcare providers, and journalists can win a Rare Angel Award. In the media category, TV shows won, among others, previously You will get it (BNN-Vara) and Diagnosis required (RTL). Previous award recipients include Suzanne Passmans, a pediatric dermatologist at Radboud UMC, and physiotherapist Piet de Kleijn, who specializes in hemophilia. In the ‘Patients and Relatives’ category, the award previously went to Mieke van Leeuwen, who has been active for more than forty years as an employee and volunteer in patient organizations for people with very rare syndromes and intellectual disability.