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Alliance4Rare

Working together towards a healthier future

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.

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Alliance4Rare – working together to give hope

 

  • “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.”

    — Dr. h. c. mult. Friede Springer, Friede Springer Stiftung
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  • “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.”

    — Ines Fasting, Berliner Sparkassenstiftung Medizin
  • “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.”

    — Wera Röttgering, Herzenswünsche e. V.

Did you know, that...

...at least 1,500 children and adolescents die every year in Germany from rare, under-researched diseases?
andrea katheder, Berlin 2023

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!

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Without the funding from the Alliance4Rare, my research project would not be possible in everyday university life.

— Dr. Felix Boschann, „Clinician Scientists for Rare“ participant

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.

— Dr. Leonie Schumm, „Clinician Scientists for Rare" participant

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.

— Dr. Lorenz Chua, Medical Scientist for Rare

Alliance4Rare offers me the unique opportunity to devote time to patients with rare diseases alongside my specialist work in order to speed up diagnosis.

— Dr. Nina Christine Knopf, „Clinician Scientists 4 Rare“ participant

 

Alliance4Rare research partners

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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.

  • Prevention

    Research into the early detection and secondary prevention of rare diseases and the clarification of diseases without a confirmed diagnosis.

  • Rare2Common

    Research into rare diseases with significance for common diseases aimed at discovering therapeutic approaches that are not recognizable in the existing disease model.

 

 

  • Innocure

    Targeted development of innovative therapies for rare diseases as part of proof-of-concept studies with small case numbers.

  • Cope&Hope

    Health services research on supportive measures for rare and unexplained diseases without a specific treatment option.

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More Information

Do you have questions about Alliance4Rare?

  • Dr. phil. Franziska Krause
    • Dr. phil. Franziska Krause
    • Programmleitung
    • (0)228 5227 9986
    • krause@elhks.de
  • Sanna Börgel
    • Sanna Börgel
    • Stiftungsleitung
    • +49 (0)228 5227 9999
    • boergel@elhks.de

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