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

Mr. Frank, what type of information does the portal provide and for whom is it intended?

Martin Frank: The already existing information on rare diseases is very scattered and hard to find. ZIPSE is designed to refer to all quality-assured databases and services and convey the existing information in a purposeful manner. We would like to create a central point of contact for care providers such as physicians or self-help groups, as well as patients and family members where they can obtain information relating to a specific disease and target group.

How is the portal set up?

Frank: The homepage includes essential information sources on diagnosis, disease pattern, communication, specialized facilities etc. Here you can find introductory texts that provide information on fundamental problems or studies, and a link list with resources that offer diagnostic information for example.

If a diagnosis is already available, you can also search for disease-specific information via a search field. The hits can then be sorted. The range of possibilities is very wide: if needed, the information can be filtered based on various topics such as resources, psychosocial counseling, self-help groups as well as specialized physicians and facilities.

We also suggest phone counseling services such as the hotline of the German Alliance of Chronic Rare Diseases (German: Allianz für Menschen mit Chronischen Seltenen Erkrankungen), ACHSE.
Photo: Elderly man sitting in front of laptop; Copyright: panthermedia.net/Markus Hofmann

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

ZIPSE is currently on the brink of publication. What other goals are you pursuing with the portal?

The portal is continuously enhanced and updated. In the near future, we intend to introduce a stamp of approval system where persons or groups with specialized knowledge about rare diseases such as special care providers or self-help groups can give certain pages their stamp of approval. This is designed to emphasize the quality of information at the respective web page.

The quality of information published on ZIPSE is very important to us which is why we will also conduct these types and related quality assurance measures in the future.

What does inclusion mean to you?

Frank: For me, inclusion means the equal participation of all persons in every area of life. To make this possible for persons living with rare diseases, as a society, we need to remove the obstacles affected persons are frequently faced with. Among others, this might be the need for information on very specific social and benefit-related topics that are not sufficiently addressed, for instance.

ZIPSE provides an important contribution by making quality-assured information accessible which embodies the prerequisite for actively dealing with the disease and life in our society. We hope to contribute by removing obstacles when accessing information which subsequently results in a better life and care provision.
More about ZIPSE (only in German) at: www.portal-se.de
Photo: Michalina Chrzanowska; Copyright: B. Frommann

© B. Frommann

Michalina Chrzanowska
(translated by Elena O'Meara)