Together for a
healthier future

Gemeinsam arbeiten wir 
 an einer gesünderen 

The Alliance4Rare combines the expertise of research-strong university children's hospitals with the creative power of sponsoring partners. Together, we pave the way for the development of innovative therapeutic approaches for rare diseases. Our mission: to enable medical progress where it is needed most.
Every year, at least 1,000 children and adolescents die in Germany from rare diseases that have not yet been adequately researched. At the same time, a new era in medicine is being heralded: Increasingly, doctors are learning to intervene in the underlying pathomechanisms of a disease. In individual cases, one can already speak of healing.

Die Alliance4Rare versteht sich als Brücke zwischen den sich schnell entwickelnden Möglichkeiten moderner Medizin und dem immensen Forschungsbedarf in der Kinderheilkunde. Das Forschungsnetzwerk umfasst bei Gründung vorerst drei universitäre Standortpartner:innen in Berlin, Dresden und Göttingen. Es soll zügig zu einer bundesweiten Versorgungs- und Forschungsstruktur für Seltene Erkrankungen bei Kindern und Jugendlichen weiterentwickelt werden. Durch ein gezieltes Ausbildungs- und Förderprogramm qualifiziert, vernetzt und ermutigt die Alliance4Rare forschungsstarke junge Ärzt:innen, sich in Klinik und Forschung dauerhaft den bislang nur unzureichend verstandenen Krankheiten und den von ihnen betroffenen Familien zu widmen.
Info-Flyer Alliance4rare
DID YOU KNOW THAT least 1,000 children and adolescents die every year in Germany from rare diseases that have not yet been adequately researched so far?
Alliance4Rare - a visionary care and research network for rare diseases
The Alliance4Rare research network combines the expertise of leading institutions in pediatric and adolescent medicine along a consensus research strategy for rare diseases. This new approach connects the most urgent medical needs with promising therapeutic approaches. By implementing these strongly needed cross-location structures, which are to be expanded in the future through further network and funding partners, the Alliance4Rare strengthens the entire research area in the long term.
Alliance4Rare Logo
  • Intensive cooperation with other sites
  • Compatibility of clinical and scientific activities
  • Cross-location offers for education and training
Logo Charité
Logo Universitätsklinikum Carl Gustav Carus
BIH Logo
Logo Universitätsmedizin Göttingen
Proven expertise in research on rare diseases
Complementary focal points
Collaboration in innovative care projects
Established NAMSE Type A centers
Access to innovative research infrastructure
Embedding in European Reference Networks (ERNs)
Specialized structures for clinical research
Active networking of research data
friede springer stiftung
Eva Luise und Horst Köhler Stiftung Logo
Scientific Priorities
Scientific Priorities The scientific priorities of the Alliance4Rare focus on projects that are urgent for the survival as well as the quality of life of the people affected and have a high innovation potential. Continous exchange with ACHSE e.V. ensures the inclusion of the patient’s perspective.
of research focus
Grafische Darstellung Blutanalyse, ein Reagenzglas und ein Tropfen Blut


Research for early detection and secondary prevention of rare diseases and the exploration of diseases without a confirmed diagnosis.
Grafische Darstellung Mikroskop


Erforschung Seltener Erkrankungen mit  Bedeutung für häufige Krankheiten, um Therapieansätze zu entdecken, die im Krankheitsmodell nicht erkennbar sind.
Grafische Darstellung Tabletten und Spritze


Selective development of innovative therapies for rare diseases within the framework of proof-of-concept studies with small case numbers.
Grafische Darstellung von vier Händen, die einander am Handgelenk halten, so dass ein Quadrat entsteht, in der Mitte ist ein rotes Herz


Health Services research on supportive interventions for rare and unexplained diseases without specific treatment options.
Grafische Darstellung Lupe und DNA Strang


Platform that provides patients without a confirmed diagnosis suffering from a potentially rare or complex disease with a new structured approach to molecular and clinical in-depth analysis and individual case consultation.
Logo BIH
We support research
Ensuring that medical progress reaches everyone
Since 2021, on the initiative of the Eva Luise and Horst Köhler Foundation, an alliance of non-profit foundations, donors and scientists has been working together for a visionary care and research network for rare diseases.

Alliance4Rare's funding partners invest in research where medical progress is needed most: in pediatrics.

Children and adolescents are affected to a particular extent by fatal diseases that have not been adequately researched due to their rarity. If you would like to help pave the way to a healthier future for the "orphans of medicine," please contact us.
Sanna Börgel

Sanna Börgel

+49 (0) 151 4129
Dr. Franziska Krause

Dr. phil. Franziska Krause

Program Manager
+49 (0) 151 5082

Help the 
orphans of medicine!

Donation account
Eva Luise and Horst Köhler Foundation for
People with Rare Diseases
Sparkasse KölnBonn
IBAN DE83 3705 0198 1901 4480 17
Donate now
Newsletter subscription
Our free newsletter informs you about current calls for proposals, events and projects on rare diseases.
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram