D66 & healthcare organizations want EU members to work together to tackle rare diseases

Dutch political party D66 has put together a manifesto, along with over 90 patients with rare medical conditions and healthcare organizations, in which they are pleading for European cooperation to improve the treatment of rare conditions. As there is little attention paid to people with special diseases, fewer treatments and medicines are being developed than for common diseases.

The authors claim that large-scale research into rare and often severe diseases will lead to more effective patient care if handled collaboratively, rather than per nation. They think countries should share more knowledge about diagnoses and treatments. The initiators also suggested a European research fund to conduct more comprehensive research.

A disease is labeled "rare" when it occurs in a maximum of 1 in 2,000 people. There are around 7,000 rare diseases, like metabolic diseases, muscle diseases, and specific types of cancer.

D66 MP Wieke Paulusma was slated to hand over the appeal to the caretaker Health Minister and fellow D66 member Pia Dijkstra earlier this week.