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.

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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“.

Scott B. Snapper MD, PhD, Boston Children’s Hospital, Harvard Medical School, USA

Prof. Kanya Suphapeetiporn, MD, PhD, Chulalongkorn University, Bangkok, Thailand

Betty Ayisi, MD Ghana Armed Forces Medical Services- 37 Military Hospital, Accra, Ghana Head of Department : Dr Emmanuel Parbie Abbeyquaye, MBChB DPDM FGCP FWACP, Consultant Paediatrician

Dr. Roya Sherkat, Isfahan University of Medical Sciences, Iran

Prof. Ekrem Ünal, Department of Pediatrics, Erciyes University, KANKA Pediatric Hematology-Oncology Hospital, Kayseri Turkey

Saul Oswaldo Lugo Reyes, Instituto Nacional de Pediatria, Mexico City, Mexico

Yasser Wali, Sultan Qabbos University, Muscat, Oman

Raz Somech, MD, PhD, Sheba Medical Center, Tel Aviv University, Israel

Prof. Wojciech Mlynarski, MD, PhD, Medical University of Lodz, Poland

Assoc. Prof. Dr Adli Bin Ali, University Kebangsaan Malaysia Medical Center, Kuala Lumpur, Malaysia Department of Paediatrics

Prof. Graham Lieschke, Australian Regenerative Medicine Institute, Monash University, Australia

Aleixo Muise MD, PhD, FRCPC, Sick Kids, University of Toronto, Canada

Dr. José Luis Franco, School of Medicine, University of Antioquia, Medellín, Colombia

Assistant Prof. Yoko Mizoguchi, MD, PhD Graduate School of Biomedical and Health Sciences Hiroshima University Japan

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.

Joint publications 2022

Selection of joint publications within the former DAAD Thematic Network: Ten for Rare: Research for Rare Diseases and Personalized Medicine 2001-2021

In addition, a series of international scientific symposia and exchanges were held.