Forschung - Alliance4Rare
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.
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 Alliance4rareDie 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.
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.
Alliance4Rare
gemeinsam Zukunft schaffen
Wissenschaftliches Arbeiten und die Versorgung von Patient:innen sind bei Seltenen Erkrankungen untrennbare Aufgaben. Daher zeichnen sich die als Gründungspartner assoziierten Universitätskinderkliniken durch eine hervorragende Infrastruktur und ausgewiesene Expertise in Forschung und Klinik aus. Das setzt Ärzt:innen voraus, die den Spagat zwischen Labor und Krankenbett nicht scheuen. Deshalb investieren die Förderpartner:innen der Alliance4Rare gezielt in den dringend benötigten wissenschaftlichen Nachwuchs. Mit unserem "Clinician Scientists for Rare Programm (CS4RARE)" bieten wir einen strukturierten Karriereweg für forschende Kinderärzt:innen an.
- Intensive cooperation with other sites
- Compatibility of clinical and scientific activities
- Cross-location offers for education and training
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
of research focus
PREVENT
Research for early detection and secondary prevention of rare diseases and the exploration of diseases without a confirmed diagnosis.
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.
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.
