TARGETED FUNDING

Research is the
first step toward a cure

"We are experiencing a turning point in medicine. Through consistent research funding, we can save seriously ill children from death or lifelong disability."

Annette Grüters-Kieslich mit Baby auf dem Arm, beide lachen

Prof. Dr. med. Annette Grüters-Kieslich

Chairwoman of the Eva Luise and Horst Köhler Foundation

Alliance4Rare

gemeinsam Zukunft schaffen

"About every 20th newborn is born with a rare disease. We doctors are often "empty handed" and can only alleviate the symptoms, if anything at all. Many of these children will never be able to lead an independent life. The suffering of the concerned families still touches me deeply, even after 40 years in the profession.

What gives 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 puts us in a position of responsibility to act swiftly and decisively. So that everyone can participate in medical progress."

APPLY NOW UNTIL SEPTEMBER 5, 2023

Current Call for Proposals: Junior Clinician Scientist for Rare Program (JCS4Rare)

The research network Alliance4Rare, initiated by the Eva Luise and Horst Köhler Foundation, and the Berliner Sparkassenstiftung Medizin will fund four positions in the fields of pediatrics and human genetics, each with 25% research time on rare diseases, at the Charité Universitätsmedizin site as of January 1, 2024.

CLINICIAN SCIENTISTS IM PORTRÄT

Dr. Simon Badura, Universitätsmedizin Göttingen

Um forschenden Kinderärzt:innen schon in der Ausbildung die nötigen Freiräume für wissenschaftliches Arbeiten auf hohem Niveau zu verschaffen, setzt das von der Eva Luise und Horst Köhler Stiftung initiierte Forschungsnetzwerk Alliance4Rare unter anderem auch auf strukturierte Clinician Scientist Programme. Einer von ihnen ist Dr. Simon Badura vom Universitätsklinikum Göttingen. Er stellt sich und seine Forschungsarbeit vor.

ALLIANCE4RARE: CLINICIAN SCIENTISTS IM PORTRÄT

Dr. Nina-Christine Knopf, Gustav-Carus Universitätsklinik Dresden

In order to provide research-based pediatricians with the necessary freedom for high-level scientific work during their qualification, the research network Alliance4Rare, initiated by the Eva Luise and Horst Köhler Foundation, focuses among other things on structured clinician scientist programs. Some of the fellows who have recently started their work introduce themselves and their projects.

INTERVIEW

"There is a lack of role models and research funding"

Im Interview mit dem 'themenbote medizin' stellt Sanna Börgel, Geschäftsführerin der Alliance4Rare gGmbH, die Initiative der Eva Luise und Horst Köhler Stiftung vor und erläutert, wie das zivilgesellschaftliche Bündnis ein visionäres Versorgungs- und Forschungsnetzwerk für Seltene Erkrankungen auf den Weg bringen und so die Entwicklung moderner Therapieansätze vorantreiben will.

CS4RARE: CLINICIAN SCIENTISTS IN PORTRAIT

Dr. Felix Boschann, Charité Universitätsmedizin

BEWERBUNG BIS 30. SEPTEMBER

Alliance4Rare: Current Call for proposals

Current call for proposals: The Alliance4Rare, an initiative of the Eva Luise and Horst Köhler Foundation for People with Rare Diseases, funds research projects on rare diseases in three program lines. A central element of the projects should be the development of targeted therapeutic approaches for rare diseases with a childhood manifestation. The application period runs until September 30, 2022.

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How we help

Eine Forscherin holt Proben aus einem Trockeneis-Behälter.

Alliance4Rare

Seriously ill children at risk of early death or lifelong disability need access to modern and promising therapies. The Alliance4Rare connects the expertise of research-strong university children's hospitals and pushes forward a consensual research strategy for rare diseases. The result: more efficient processes and greater capacity to effectively address the enormous needs.

MORE ABOUT THE ALLIANCE4RARE

Eva Luise Köhler Research Award for Rare Diseases

Research on rare diseases often faces major institutional hurdles - but is rarely in the spotlight.

With the Eva Luise Köhler Research Award, we create publicity for this important topic and support the development of the research field. The prize money of 50,000 euros provides start-up funding for research on disease mechanisms and new therapeutic approaches for rare diseases.

MORE ABOUT THE RESEARCH AWARD

Eva Luise Köhler schaut gemeinsam mit dem Forschungspreisträger 2015 und einem betroffenen Mädchen in die Kamera.

Gruppenarbeit, man sieht verschiedene Tische mit Menschen, die Unterlagen lesen

Rare Disease Symposia

When it comes to diseases with only a very small number of cases, all relevant players must pull in the same direction. That is why our Rare Disease Symposia promote knowledge transfer and close interdisciplinary collaboration between clinicians and researchers, with the involvement of patient organisations, authorities and industry partners.

TO THE SYMPOSIA

National Registry for Rare Diseases (NARSE)

Many rare diseases are almost unexplored. Together with the partners of our think tank, we initiate the implementation of a sustainable patient registry for rare diseases. In this way, we will provide access to structured data on possible manifestations and courses of disease and create the basic prerequisite for targeted research and evidence-based medical care.

TO THE NARSE

Drei Ärzte schauen gemeinsam in einen Laptop.

Think Tank "Future Workshop on Rare Diseases"

The cross-institutional Rare Diseases Think Tank drives agenda setting in the field of rare diseases in order to generate attention for relevant topics in the political context. The well-being of patients is the guiding principle for all discussions and recommendations for action. um dabei zeitnah Aufmerksamkeit für relevante Themen im politischen Kontext zu generieren. Als Richtschnur aller Diskussionen und Handlungsempfehlungen dient dabei das Wohl der Patient:innen.

TO THE THINK TANK

Film portrait Nicole Schlautmann

How innovative drugs for rare diseases are developed

"Thank you for my life!" The man who says this to Nicole Schlautmann should, statistically speaking, already be dead. The fact that he can still report on his health progress is largely due to an innovative drug that was developed shortly before. It is moments like this that drive the biology graduate. Today, she holds an executive position at the international pharmaceutical company Pfizer, where she contributes her passion for the "rare" as Managing Director in Austria.

Filmporträt Prof. Dr. Christopher Baum

How does knowledge come into effect?

"We take care of the process of how knowledge comes into effect," says Christopher Baum, summarizing the mission of the Berlin Institute of Health (BIH). In order to bring new findings quickly into application, he says, it is essential to "go beyond the boundaries of one's own laboratory." Well-coordinated collaboration allows necessary steps to be worked through in parallel. Baum is convinced that this can shorten the development of new therapies by years. This is why it is not possible without broad alliances that also bring industry on board in good time.

15. Eva Luise Köhler Research Award

"A truly strong team" - Eva Luise Köhler honors Tübingen brain researcher and parents' initiative

In a festive award ceremony, Eva Luise Köhler presented the 15th Eva Luise Köhler Research Award for Rare Diseases to Dr. Simone Mayer, a molecular biologist from Tübingen, and Dr. Axel Lankenau and Dr. Julia Matilainen from the self-help association PCH-Familie.

REVIEW 7. RARE DISEASE SYMPOSIUM

Early Detection and Treatment - The Role of Prevention in Rare Diseases

The role of prevention in the field of rare diseases was the focus of the 7th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation. Together with around 150 participants, the possibilities and limits of prevention in the field of rare diseases were examined from a medical, ethical and social perspective.

PRESS RELEASE RESEARCH AWARD 2023

Award for a therapy development for the neurological hereditary disease PCH2a

Eva Luise Köhler will award the research award named after her to molecular biologist Dr. Simone Mayer from Tübingen in the presence of Federal Minister of Health Prof. Dr. Karl Lauterbach at the Berlin-Brandenburg Academy of Sciences and Humanities on Friday, June 9, 2023 at 5 pm. Together with her, Dr. Julia Matilainen and Dr. Axel Lankenau from the self-help association PCH-Family are honored

Filmporträt Prof. Dr. Annette Grüters-Kieslich

What are we waiting for?

Annette Grüters blickt auf 40 Jahre Engagement für Kinder mit Seltenen Erkrankungen zurück. Manche Schicksale beschäftigen sie seit Jahrzehnten. Das mag ihre Ungeduld erklären. „Unerträglich“ findet die Kinderärztin, die im Laufe ihrer Karriere viele hochrangige Ämter bekleidet hat, dass noch immer eine konzertierte nationale Forschungsstrategie fehlt, obwohl es mehr aussichtsreiche, neue Therapieoptionen gibt als je zuvor. Und so fängt sie eben selbst an zu planen und eine „Allianz der Willigen“ zu schmieden. Denn: „Worauf warten wir noch?“

Filmporträt Thorsten Marquardt

„Da ist noch ganz viel Potenzial“

Zu ihm kommen oft Kinder ohne Diagnose, die schon eine lange Odyssee hinter sich haben. Nicht immer gelingt es Prof. Marquardt rechtzeitig herauszufinden, wie man ihnen helfen kann. Trotzdem weiterzusuchen, das sei man den Familien schuldig: „Wenn ein Kind stirbt, bleibt immer was zurück, sozusagen als Vermächtnis für das nächste Kind.“ Marquardt, der mit seinem Team schon mehr als 20 Krankheiten entdeckt und viele davon behandelbar gemacht hat, ist überzeugt, dass in der Forschung zu Seltenen Erkrankungen „noch ganz viel Potenzial“ steckt.

Filmporträt Jutta Gärtner und Hendrik Rosewich

We won't wait until Monday morning

How do you work in the awareness that you are often the only hope for families with a seriously ill child? Jutta Gärtner and Hendrik Rosewich are one of the few points of contact for pediatric neurological disorders, such as pediatric dementia or unclear movement disorders. Once a diagnosis is made, a grueling race against time begins. In the search for therapies, patient care and research must go hand in hand - also often on weekends. The neuropediatricians at the University Hospital Göttingen experience their work as "deeply meaningful".

Press releases