We asked ... Martin Frank, Project Manager for ZIPSE – Central Information Portal for Rare Diseases

"We need to remove obstacles as a society to make participation for persons living with rare diseases possible"

It is estimated that there are over 6,000 types of rare diseases worldwide. Diseases are considered rare when less than five in 10,000 persons are affected by a specific disease pattern. Hardly any qualitative information about diagnosis, treatment or networking opportunities is available. Project Manager Martin Frank explains how the Central Information Portal for Rare Diseases, ZIPSE in short, would like to change that.


Photo: Martin Frank; Copyright: CHERH

Martin Frank; © CHERH

Photo: Elderly man sitting in front of laptop; Copyright: Hofmann

ZIPSE wants to makes sure that people with rare diseases and their relatives find all the information they need online; © Hofmann

Photo: Michalina Chrzanowska; Copyright: B. Frommann

© B. Frommann

Photo: Hand holding microphone; Copyright: