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Alliance

German-Turkish cooperation in support of children with rare diseases

 The Care-for-Rare Foundation has established a cooperation with Turkish partners in order to be able to better provide for children suffering from rare diseases in the future. As part of the German-Turkish Year of Science, the German Ministry for Education and Research (BMBF), as well as the Turkish Ministry for Research, Industry and Technology aim to support more intensive and increased research cooperations and to boost public awareness for children suffering from rare diseases- “the orphans of medicine”.

In the context of the cooperation Care-for-Rare has initiated the following projects:

Photo exhibition in Istanbul, Ankara, Kayseri and Munich

A photo exhibition of children with rare diseases will be open to the public from September to January in various Turkish and German cities. In impressive photos, photographer Kamer Aktas portrays children from Turkey and Germany who suffer from a rare disease and who, together with their families, have to face the challenges connected to suffering from a rare disease again and again on a daily basis.

Our mission is supported by various different prominent figures in German society: the former mayor of Munich, Christian Ude, as well as the mayor of Maltepe, Istanbul, Ali Kilic, are providing their support for the organisation of the exhibition and the vernissage that will take place at the beginning of September in Istanbul. Professional footballer Ceyhun Cülselam from the football club Hannover 96, cabaret artist Django Asül and business consultant Faize Berger, who all have Turkish roots, are lending their support to the project as well. After the week-long opening event in Instanbul, the exhibition will move on to Ankara and Kayseri in order to raise awareness of the plight of children suffering from rare diseases in these cities. The exhibition’s final stop is in Munich: a closing event in Munich will hopefully also make the population of Bavaria’s capital city aware of rare diseases and those who suffer from them.

Save the date

 

Workshop

A workshop about rare diseases has already taken place in March 2015 at the Dr. von Haunerschen Paediatric Hospital in order to support and nurture the exchange between German and Turkish experts on a scientific level. 25 scientists and doctors from Turkish university hospitals came to Munich to discuss the newest research findings in the field of primary immunodeficiencies and the current challenges faced when providing care for patients in Turkey. We are confident that with help of the newly established cooperations we will be able to provide long-term help for children with rare diseases in Turkey as well as to intensify research into primary immunodeficiencies!

Workshop

 

Background

The Care-for-Rare Foundation has worked together with various partners from Turkey in the fields of research into, and treatment possibillities for, rare diseases for a number of years now. In order to strengthen the international alliances we are implementing a two-step awareness project for children with rare diseases in Turkey as part of the German-Turkish Year of Science. The Federal Ministry for Education and Research (BMBF) has provided 40 000 Euros worth of financial support.

The project means that the Care-for-Rare Foundation can build bridges between both countries and allows experts and supporters to be brought together. Our aim is to make the public, and also those working in the field of science, aware of the relevance of the topic “rare diseases”, espcially with regard to the crucial importance of conducting basic research. New research efforts are urgently needed in order to be able to develop innovative treatments in the long-term and to give children with rare diseases the chance of recovery.

To date, there is a lack of adequate care structures for people with rare diseases. In order to establish better structures a national action plan is needed, something that is already obligatory in the European Union. The care of patients suffering from rare diseases can also be optimised by the establishment of centres of expertise, connecting patient organisations with one another, setting-up official information centres and establishing a help-line. In order to implement these measures cross-border cooperation is necessary, as well as the mutal exchange of expertise. The mission of the Care-for-Rare Foundation and its partners is to initiate the necessary structures and research efforts so that neither here in Germany, nor in Turkey, must children die from rare diseases.

Dr. Albrecht Matthaei

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

 

Django Asül supports the project.

Djamgo Asül „Django Asül: “The only good thing about a rare disease is that it is just that: rare. The bad thing is that even if they are rare, millions of people are still affected by them. This makes it all the more important that institutions exist that are engaged in the fight against rare diseases. An illness is only acceptable when it has ceased to exist“.

 

Faize Berger supports the project.

Faize Berger

„Children are our future and above all loving and vunerable creatures. When they are affected by a rare disease they must often undergo a long odyssey of suffering until a diagnosis can be made.

The project „German-Turkisch alliances for better care for children with rare diseases“ will above all strengthen the already existing bonds between Germany and Turkey and will ensure that research results can reach children suffering from rare diseases more quickly and efficiently."

 

Ceyhun Gülselam supports the project.

"As a professional footballer I know how important it is to be healthy and that being healthy must never be taken for granted. We are supervised medically on a daily basis and cannot value the fact highly enough that we are able to label ourselves as „healthy“.

There are lots of people worldwide whose everyday worries are not trifles, but diseases that are difficult to treat and that drastically restrict the lives of those suffering from them. I think it is wonderful that special care and attention is given to those suffering from rare disases by the Care-for-Rare Foundation and that it provides glimmers of hope for these people.

I feel at home in both Germany and Turkey and feel connected to both countries and cultures. Therefore, it is especially important to me that the people who call the same countries home that I do are well."