They are rare, often under-researched and it is difficult to learn about them – rare diseases. Patients, family members and even physicians frequently have a hard time finding qualitative information on diagnosis and treatment options or specialized care providers. Thanks to the Central Information Portal for Rare Diseases, ZIPSE, this should soon change.
In this interview with MEDICA.de, Martin Frank talks about the already available range of information and the goals for the new portal.
Mr. Frank, how can patients and physicians presently find information on rare diseases?
Martin Frank: There are several online portals dedicated to rare diseases – providing either general information or specialized information about certain diseases. Orphanet is the European database for rare diseases. It provides information that is primarily helpful to care providers such as physicians. There are also several...
Read the interview with Martin Frank at MEDICA-TradeFair.com: http://www.medica-tradefair.com/ZIPSE_interview_08_04_2015