Kindness for Kids was founded with the goal to improve the situation of children with rare diseases through both social projects and funding for research.
Between 2004 and 2013, Kindness for Kids supported numerous different research projects in the pediatric rare disease field. In 2014, Kindness for Kids established a new research funding program, focusing on basic and health services research. The foundation awards PhD-fellowships, an annual health care award as well as a tenure-track professorship and aims to increase the knowledge transfer between affected families and scientists.
Basic Research
„Basic research sows the seeds of tomorrow’s innovations.“ – anonymous
Basic research deals with the causes of rare diseases. Since 80% of all rare diseases are related to genetic defects, modern genetic analyses not only improve knowledge about each rare disease, it also allows highly accurate diagnoses. This opens the door to personalized medicine whose efficient treatment minimizes side effects and thus seems very successful.
In the European Union, only about 80 different “orphan drugs” (medicine for rare diseases) have been released and approved for Germany – for an estimated 7,000 different rare diseases (www.orpha.net).
That is why Kindness for Kids is funding high-skilled European students and scientists with PhD- and Postdoc-fellowships in the basic research field.
Disease-oriented medical research (DFG’s opinion on health services research in Germany: update - prospects - funding from 2010, p. 23 - 24)
Health Care services research
„Health services research examines how people get access to health care, how much care costs, and what happens to patients as a result of this care. The main goals of health services research are to identify the most effective ways to organize, manage, finance, and deliver high quality care; reduce medical errors; and improve patient safety." - Agency for Healthcare Research and Quality, 2002
Health services research is interdisciplinary, qualifying patient and health care, evaluating the efficiency of medical care structures and processes and analyzing the implementation of new medical care concepts.
The scientific basis of health services (Dr. Timmer, Spring School 2015, German Health Services Research Network registered society)
The level of rarity as well as diversity of rare diseases (7,000 different illnesses) makes it impossible even for the best pediatricians to identify and diagnose a rare disease. Insufficient networking and distances which need to be overcome also impede a quick diagnosis. Psychosocial support, appropriate medical counseling and ongoing care are lacking. Most rare diseases cannot be accurately billed in the German health care system. Beside the limited possibilities of treatment, this represents another difficulty. Structural changes and interdisciplinary networking, the so-called ‚shared care‘, can improve the situation. Furthermore, telemedicine and the new media provide additional options to help.
All these problems require solutions. Health services research aims to improve the sometimes very difficult living conditions of patients and their families. And that is the reason why we got involved in this matter. Our main approach is the establishment of a tenure-track professorship for rare pediatric diseases.
In order to accelerate improvement, we also launched the Kindness for Kids Health Care Award.
Kindness for Kids also finances symposia with the aim to increase the knowledge transfer between affected families and scientists since patients and their parents and relatives know the most about their own diseases. That is why knowledge transfer is an essential weapon against rare diseases.