Alliance4Rare – Research initiative for children with RD
Alliance4Rare combines the expertise of research-oriented university children’s hospitals with the creative drive of supporting 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 most urgently needed.
How a research initiative for rare diseases can save the lives of sick children and young people
Every year, at least 1,500 children and adolescents in Germany die from rare diseases that have been insufficiently researched to date. At the same time, we are currently experiencing a turning point in medicine: thanks to powerful diagnostics and precise cell and gene therapy procedures, the causes of diseases can now be better understood and treated than ever before. For the first time, children and adolescents suffering from monogenic rare diseases can hope for a cure or at least a significant alleviation of their suffering.
Alliance4Rare therefore sees itself as a life-saving bridge between the rapidly developing possibilities of modern medicine and the immense need for research into rare diseases.
The scientific focus is on monogenic diseases that are so severe that they lead to severe disabilities or early death if left untreated. A demanding review process ensures that the funds made available are directed to cases where great suffering meets particularly promising therapeutic strategies. In order to counteract the immense shortage of young talent in pediatric research, the Alliance4Rare qualifies, networks and encourages young doctors with strong research skills through a targeted training and support program.
Help the orphans of medicine!
ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.
Alliance4Rare – working together to give hope
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READ MORE“I would like to see more attention paid to researching and treating rare diseases, with the aim of giving those affected a chance for a better life.”
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READ MORE“By promoting young talent in a targeted manner, we are working hard to recruit highly trained pediatricians – they are the future of medicine and hope for many families in Berlin and around the world.”
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“Herzenswünsche e.V. supports Alliance4Rare because hope for more effective therapies is probably the greatest wish of all for many families with seriously ill children.”
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“Alliance4Rare represents the power of community: together, we are opening doors to a healthier future. We are delighted to be part of this pioneering initiative.”
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READ MORE“Researching doctors are often of great importance for the development of therapies for rare diseases. We therefore promote the career paths of clinician scientists through joint calls for proposals.”
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“Understanding the genetic causes of diseases is of vital importance to those affected in many ways. That is why we are committed to researching them.”
Did you know, that...
...at least 1,500 children and adolescents die every year in Germany from rare, under-researched diseases?
Our Clinician Scientists for Rare Program
– Alliance4Rare’s young talent development program
Alliance4Rare relies on a structured training and support program to adequately prepare researching paediatricians for challenging tasks to come, and to counteract the immense shortage of young talent in pediatric research. The Clinician Scientist for Rare program provides participating physicians with the necessary freedom and knowledge for scientific work at a high level. As a funding or research partner of the Alliance4Rare, you too can shape the future!
Without the funding from the Alliance4Rare, my research project would not be possible in everyday university life.
I had just started a position at the largest children’s hospital in Switzerland. I came back to Berlin for the opportunity to combine excellent research and patient care.
Everyone deserves a chance to live a normal and happy life. By supporting the Alliance4Rare, researchers like me can hope to give patients with rare diseases a better future.
Alliance4Rare offers me the unique opportunity to devote time to patients with rare diseases alongside my specialist work in order to speed up diagnosis.
Alliance4Rare research partners
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Research
Call for applications for the 18th Eva Luise Köhler Research Award for Rare Diseases
In order to improve medical care for the "orphans of medicine", the Eva Luise and Horst Köhler Foundation, in cooperation with ACHSE e. V., has been awarding a research award…
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A4R – Alliance4Rare
Alliance4Rare call for proposals: Junior Clinician Scientists for Rare (JCS4Rare)
The Alliance4Rare offers Junior Clinician Scientists for Rare (JCS4Rare) a structured specialist training program that enables prospective pediatricians and human geneticists with a clearly recognizable scientific interest in rare diseases…
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Tenders
Call for applications for the 17th Eva Luise Köhler Research Award for Rare Diseases
In order to improve medical care for the "orphans of medicine", the Eva Luise and Horst Köhler Foundation, in cooperation with ACHSE e. V., has been awarding a research award…
Model for the future of pediatric research
Alliance4Rare – a visionary care and research network for rare diseases
The Alliance4Rare research network pools the expertise of leading institutions in university pediatric and adolescent medicine for the first time along a cross-site consensus research strategy for rare diseases. This is new in Germany and aims to bring together the most urgent medical needs with promising therapeutic approaches. By implementing these urgently needed cross-site structures, the Alliance4Rare is sustainably strengthening the entire research sector.
What all Alliance4Rare research partners bring to the table:
- Proven expertise in rare diseases research
- Collaboration in innovative care projects
- Established NAMSE Type A centers
- Intensive cooperation with other locations
- Cross-location offers for training and further education
- Compatibility of clinical and scientific activities
- Access to innovative research infrastructures
- Anchoring in European Reference Networks (ERNs)
- Specialized structures for clinical research
- Active networking of research data
Scientific focus
The Alliance4Rare research programs focus on projects that are urgent for the survival and quality of life of those affected and have a high potential for innovation. The exchange with Achse e.V. ensures the unconditional inclusion of the perspective of those affected.
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Prevention
Research into the early detection and secondary prevention of rare diseases and the clarification of diseases without a confirmed diagnosis.
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Rare2Common
Research into rare diseases with significance for common diseases aimed at discovering therapeutic approaches that are not recognizable in the existing disease model.
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Innocure
Targeted development of innovative therapies for rare diseases as part of proof-of-concept studies with small case numbers.
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Cope&Hope
Health services research on supportive measures for rare and unexplained diseases without a specific treatment option.
Why we need a research initiative for children with rare diseases
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More InformationDo you have questions about Alliance4Rare?
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- Dr. phil. Franziska Krause
- Programmentwicklung und -management
- (0)228 5227 9986
- krause@elhks.de
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- Sanna Börgel
- Fundraising und Kooperationen, Geschäftsführung Alliance4Rare
- +49 (0)228 5227 9999
- boergel@elhks.de
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A4R – Alliance4Rare
Biliary atresia: How do children live with this rare liver disease, and what is Alliance4Rare researching? Author Berit Hullmann, chairwoman of Leberkrankes Kind e.V., met with families and researchers. She…
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A4R – Alliance4Rare
University Hospital Tübingen Becomes New Site Partner of Research Initiative Alliance4Rare
A strong network grows even stronger: With support from the Wilfried and Martha Ensinger Foundation, University Hospital Tübingen can now become the fifth location in the Alliance4Rare network.
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A4R – Alliance4Rare
Clinician Scientists in Profile: Dr. Lara Lechner, Charité – Universitätsmedizin Berlin
Our Alliance4Rare research network not only invests in research programs but, through Clinician Scientist Programs, also fosters urgently needed scientific talent. Here, Dr. Lara Lechner/ Charité – Universitätsmedizin Berlin introduces…
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