Care-for-Rare Alliance
Network excellence worldwide
The Care-for-Rare Alliance is an international network of physicians and scientists dedicated to the Foundation’s vision – to cure all children with rare diseases worldwide. Following the mission “From Discovery to Cure” the experts work in children’s hospitals or at scientific institutes and conduct joint research to decipher rare diseases and develop new therapies. The mother ship is the Care-for-Rare Center at the Dr. von Haunerschen Children’s Hospital at LMU Munich.
A core value of the Care-for-Rare Foundation is that every child regardless of race, ethnicity, nationality, socioeconomic status, and religion has access to the life saving diagnostics, treatments, and cures that they inherently deserve.
Global cooperation is critical to curing rare diseases. While the incidence of specific genetic mutations and diseases may be extremely low in one country or population, occurrences worldwide allow for more robust study, understanding of, and development of treatments for, rare disease patients. The wider our geographic reach and the stronger our ties to global partners are, the more we can share data effectively, understand disease mechanisms, and work towards treatments and cures for patients worldwide.
We support increased research on primary immunodeficiency (PID), with robust and growing partnerships in the Middle East, Northern Africa, Southeast Asia, and South America. Many Alliance partners also focus their research collaborations on rare diseases of the blood, bone marrow, and the immune system.
Aims of our network are:
- Continuation and Extension of the DAAD Thematic Network: Ten for Rare: Research for Rare Diseases and Personalised Medicine
- Development of new diagnostic concepts & individualised therapies for rare diseases (especially for genetic diseases of the immune system)
- Intensification of joint research activities on rare diseases across national borders
- Training of future generations of physician & clinician scientists in the area of rare diseases and personalised therapies
- Capacity-Building and Empowerment of local experts in less privileged countries through training and international research cooperation
- Promoting mobility and junior researchers
- Increasing awareness towards rare diseases amongst medical staff, academics and researchers, and the general public
Activities of our program are:
- Support of PhD candidates’ research stays & of students’ and PIs’ short-term stays
- Summer Schools & workshops on rare diseases and personalised medicine
- Initiation of joint research projects & publications
- Yearly or biennial strategic meetings of PIs
- Guest Lectures with renowned scientists at partner institutions
Read more about our current Alliance projects:
Long-Covid: Special outpatient clinic at Munich University Children’s Hospitals
Fighting together against pediatric cancer
German-Thai alliance for better care of children with rare diseases
Extension of the sequencing platform
Scivias Study: New Directions in Diagnostics and Prevention
Impact Assessment
Our scientific partners
The Alliance connects centers of excellence around the world with hospitals and universities in low- and middle-income countries that historically have not had access to robust resources. Care-for-Rare is actively working to change this disparity through data-set sharing, educational collaboratives, and the future establishment of Care-for-Rare Local Excellence Centers that will provide knowledge and educational activities to the skilled clinicians and researchers in developing nations.
The Care-for-Rare Global Alliance Program consists of many different individual networks. In total we connect more than 50 countries and around 200 institutions worldwide. Our Alliance also continues to implement and fund activities of our former DAAD funded Thematic Network „Ten for Rare: Research for Rare Diseases and Personalised Medicine“.
Our network's impact:
The results of the research funded under the auspices of the Care-for-Rare Alliance are recognized and appreciated by the scientific community. Although there are no generally accepted criteria for impact assessment in the area of research into rare diseases, the scientific articles that have emerged with the help of the Care-for-Rare Foundation have been widely disseminated in prominent professional journals for the most part (New England Journal of Medicine, Nature Medicine, Nature Genetics, Science Translational Medicine, Journal of Experimental Medicine, Gastroenterology and Blood, among others). As a result of these publications, a large number of doctors and scientists around the world have been able to share in the results and thus provide their respective patients with a precise diagnosis and also offer new treatment options. Furthermore, a large number of crystallisation centres for new scientific initiatives and projects have come into being, and the results of these activities will certainly have an impact on our understanding of rare, as well as common diseases.
For children with rare diseases
