www.care-for-rare.org | German version

Welcome to the Care-for-Rare Foundation for children with rare diseases!

Children with rare diseases, orphans of medicine, are disadvantaged in many respects: endless odyssees from doctor to doctor, wrong diagnoses and clinical mismanagement determine their lives. Many rare diseases remain incurable up to date. Only through enhanced research activities and international cooperation can we change the fortune of many children. The Care-for-Rare supports children cross-borders in order to give them hope for treatment – no matter what nationality, ethnic origins and financial background they present.


Prof. Dr. Christoph Klein      Prof. Dr. Andreas Staudacher

A disease is considered rare if less than 1 in 2,000 people are affected.

More than 80% of rare diseases are of genetic origin.
For 95% of rare diseases there is no tested and approved medication .
About 8.000 rare diseases are known to date.
Approx. 4 million German citizens have a rare disease.
The majority of those affected are children.


Care-for-Rare’s funding is divided into five main areas:

The Care-for-Rare Alliance comprises a large network of physicians and scientists. They work at academic pediatric centers or basic science institutes supporting the foundation’s mission, treating children with rare diseases, deciphering the causes of diseases and developing novel therapies.
The Care-for-Rare Academy program supports fellows from all over the world to learn about diagnosis and therapy of rare diseases.
The Care-for-Rare Aid initiative grants allow individual patients to get access to modern genomic medicine – throughout the world. Even if support of patients is not the cornerstone of the foundation’s strategy, there is an urgent need to provide help for patients in less privileged circumstances.
The Care-for-Rare Foundation offers prestigious awards to support young clinicians and scientists to initiate a promising new research project on rare diseases.
The Care-for-Rare Awareness initiative recognizes the need to increase attention, understanding and appreciation of the public towards the special situation of children with rare diseases. A special focus is placed on educational aspects and early diagnosis programs.



The Care for Rare Foundation also exists in America. It supports international research projects of the Mother Foundation in Munich and, as part of the Care-for-Rare Alliance, is expanding the worldwide network of academic centers of excellence for children with rare diseases. Our project “connecting the dots of excellence” has already resulted in the formation of the largest consortium on rare intestinal disorders. The very-early onset inflammatory bowel diseases alliance under the leadership of Boston Children’s Hospital, Toronto SickKids Hospital, and the Dr. von Hauner Children’s Hospital (Ludwig-Maximilians-Universität München) has changed the lives of countless families in more than 130 countries. Care-for-Rare connects the dots of excellence on our global map. Help us to help children with rare and still incurable diseases. There is hope for cure!



Please support children with rare diseases – donate now!

Thanks for your support!

Board of Directors
Prof. Dr. med. Christoph Klein
Founder
Prof. Dr. jur. Andreas Staudacher
Founder
Board of Trustees
Dr. Thomas Jaschke
Chairman of the Board of Trustees
Team
Dr. Albrecht Matthaei
Managing Director
Stefanie zu Sayn-Wittgenstein
Non-Profit Manager
Jan-Christoph Kaiser-Seißer
Business Development
Johannes Schwalke
Project Management