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Alliance

C4R receives BMBF funding for an alliance-project with Turkey within the frame of the German-Turkish Year of Science and Research 2014

For several years the Care-for-Rare Foundation has been working with various partners in Turkey in the areas of research and treatment possibilities for rare diseases. So as to intensify this alliance we are implementing, as part of the German-Turkish Year of Science and Research 2014, a two-stage awareness project for children with rare diseases in Turkey. The Federal Ministry of Education and Research (BMBG) supports this Care-for-Rare Initiative and has provided funding of nearly 40 000 Euros.

The concrete expansion of the German-Turkish partnership will initially take place in the context of a workshop in Munich with a delegation of current and potential research partners. Experts in the field of primary immunodeficiencies from all Turkish university hospitals will be invited. The aim of this workshop is to discuss the newest research insights into rare diseases (with an emphasis on primary immunodeficiencies), as well as current challenges in Turkey. Opportunities to advance the scientific and social development of the topic of rare diseases in Turkey will be discussed and new research projects will be initiated.

The second stage of the project will then take place in Turkey. In the so-called dissemination phase the affected children will be introduced. A photographer has travelled through Turkey photographing children with rare diseases who are receiving treatment from our partners. The Care-for-Rare Foundation wants to stage a travelling exhibition using expressive pictures that show the daily living conditions of those affected by rare diseases. After an opening event in Istanbul, the exhibition will then move on to other Turkish cities, such as Istanbul and Kayseri, so as to raise the Turkish population’s awareness for rare diseases. The exhibition’s final stop will be in Munich, a vernissage will hopefully function as an awareness raising measure.

This project enables the foundation to build bridges between the two countries and to connect researchers to one another. We will endeavour to create media coverage to accompany the travelling exhibition, so as to make the public aware of the topic and especially of the importance of fundamental research that is central to our cause. This fundamental research is indispenable if new treatments are to be developed in the long-term so as to give children suffering from rare diseases the chance of a cure. Our mission is supported by prominent members of society such as the former mayor of Munich, Christian Ude, the German-Turkish professional football player Ceyhun Gülselam, from Hannover 96, and the German-Turkish cabaret artist Django Asül.

To the present day, a suitable structure does not exist for the care of people with rare diseases in Turkey, be it a national plan of action, which is compulsary in Europe, or centres for experts, a national alliance of organisations for patients, official information centres or a help-line for those affected. Working together across national frontiers and the mutual swapping/transfer of expertise is vital in order to promote the implementation of such measures and the creation of such institutions. The main and overriding goal of the Care-for-Rare Foundation and its partners is to develop effective treatment approaches, with the help of research, so that neither here in Germany, nor in Turkey, no child need  die from a  rare disease.

Dr. Albrecht Matthaei

Tel: + 49 89 4400-57982
Fax: +49 89 4400-57702