ALLIANCE4RARE

Together for a
healthier future

Gemeinsam arbeiten wir 
 an einer gesünderen 
 Zukunft

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.

The Alliance4Rare views itself as a bridge between the rapidly developing possibilities of modern medicine and the immense need for research in pediatrics. The research network initially comprises three university partners in Berlin, Dresden and Göttingen. It is to be rapidly developed into a nationwide care and research structure for rare diseases.

For this we need you! Support the Alliance4Rare, so that children and young people with rare diseases can participate in the "medicine of tomorrow".
SUPPORT ALLIANCE4RARE
DID YOU KNOW THAT
...at least 1,000 children and adolescents die every year in Germany from rare diseases that have not yet been adequately researched so far?
FUTURE MODEL FOR PEDIATRIC RESEARCH
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.
Scientific work and patient care are inseparable tasks in the field of rare diseases. Therefore, the university children's hospitals associated as founding partners are characterized by an excellent infrastructure and proven expertise both in research and clinical practice. This requires physicians who are not afraid of balancing between laboratory and bedside. That is why the Alliance4Rare funding partners invest not only in research programs, but also in the urgently needed next generation of scientists with Clinician Scientists/Advanced Clinician Scientists programs.
  • Intensive cooperation with other sites
  • Compatibility of clinical and scientific activities
  • Cross-location offers for education and training
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
FUNDING PARTNERS
RESEARCH PROGRAMS
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.
Overview
of research focus
Icon Blutanalyse

PREVENT

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

RARE2COMMON

Research on rare diseases with relevance to common diseases in order to discover new therapeutic approaches.

INNOCURE

Selective development of innovative therapies for rare diseases within the framework of proof-of-concept studies with small case numbers.

COPE&HOPE

Health Services research on supportive interventions for rare and unexplained diseases without specific treatment options.

CADS

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.
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.

Dr. phil. Franziska Krause

Program Manager
+49 (0) 151 5082 7392krause@elhks.de
IHRE SPENDE

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
BIC COLSDE33X
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