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Our projects – how your support helps us make a difference

“We are experiencing a turning point in medicine. By consistently promoting research, we can save seriously ill children from death or lifelong disability.”

“Around one in 20 newborns is born with a rare disease. We doctors are then left “empty-handed” and can only alleviate the symptoms, if at all. Many of these children will never be able to lead an independent life. Even after 40 years in the profession, I am still deeply moved by the suffering of the families affected.

What gives me hope is the enormous gain in knowledge, this real turning point in medicine that we are currently experiencing: it provides us with precise methods and procedures that enable early diagnosis and the development of highly effective causal therapies.

This is a historic opportunity that gives us a responsibility to act swiftly and decisively. So that everyone can benefit from medical progress.”

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Alliance4Rare – Research initiatives for children with rare diseases

Alliance4Rare combines the expertise of research-oriented university children’s hospitals with the creative drive of private and institutional sponsors. Together, the partners want to enable medical progress where it is most urgently needed: Children affected by particularly serious rare diseases need pediatricians and human geneticists who are strong in research and conduct targeted research on the most urgent issues.
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Targeted promotion of young talent in pediatric research

Our Clinician Scientist for Rare Program

The Clinician Scientists for Rare program is a structured training and career path for pediatricians and human geneticists with strong research skills who do not shy away from the balancing act between the laboratory and the bedside. In order to provide young scientific talent with the necessary freedom for intensive research work and to prepare them for challenging tasks, we rely on a program that is based on the recommendations of the German Research Foundation (DFG).

Three career levels based on DFG

  • Junior Clinician Scientist for Rare Program (JCS4Rare)

    The Junior Clinician Scientist for Rare Program (JCS4RARE) offers a two-year structured training program for young, research-active physicians who already have a serious interest in the research field of rare diseases. The promising talents are to be encouraged in their interest at an early point in their career, networked with other researchers and given targeted further training.

  • Clinician Scientist for Rare Program (CS4RARE)

    The second stage of our training and career path promises intensive research work and further training: with a 50% exemption from a regular specialist position, the JC4Rare program is aimed at researchers who have completed at least three years of their specialist training in the field of pediatrics or pediatric-oriented human genetics and have demonstrated very good scientific performance during this time.

  • Advanced Clinician Scientists for Rare Program (ACS4RARE)

    The ACS4Rare program is aimed at scientifically excellent (prospective) senior physicians who want to establish an independent working group and actively shape the research area of rare diseases at their location. Through research-oriented teaching and active mentoring, the ACS4Rare pass on their experience and encourage young talents to follow the challenging but rewarding path of a Clinician Scientist for Rare.

Eva Luise Köhler Research Award for Rare Diseases

Research into rare diseases often faces major institutional hurdles – but is rarely in the spotlight. With the Eva Luise Köhler Research Prize, we are creating publicity for this important topic and driving forward the development of the research field. As start-up funding, the prize money of €50,000 enables research into disease mechanisms and novel therapeutic approaches for rare diseases.

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andrea katheder, Berlin 2023

National Register for Rare Diseases (NARSE)

Many rare diseases are virtually unexplored. Together with our think tank partners, we are initiating the implementation of a sustainable patient registry for rare diseases. This will give us access to structured data on possible disease manifestations and progression and create the basic prerequisites for targeted research and evidence-based medical care.

TO NARSE

Help the orphans of medicine!

ELHKS uses your donations in a targeted manner – so that medical progress reaches everyone.

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