Eva Luise Köhler Research Award


The Eva Luise Köhler Research Award has been awarded annually since 2008 to promote research into rare diseases on the basis of exemplary projects and to honor outstanding personalities. The prize money of € 50,000 has already enabled more than a dozen innovative research projects to be launched. We have asked previous award winners here what has happened since being awarded the funding.
Please inform yourself about our funding guidelines before applying.
The Eva Luise Köhler Research Award is awarded in cooperation with the Alliance for Chronic Rare Diseases (ACHSE).
List of all award winners
Eva Luise Köhler Research Award for Rare Diseases
- 2008 – Prof. Dr. Volkmar Gieselmann, Prof. Dr. Hans-Joachim Galla
- 2009 – Prof. Dr. Leena Bruckner-Tudermann
- 2010 – Prof. Dr. Marc Andre Weber, PD Dr. Karin Jurkatt-Rott
- 2011 – Prof. Dr. Christoph Klein, Prof. Dr. Christopher Baum, PD Dr. Kaan Boztug, Prof. Dr. Christoph von Kalle
- 2012 – Prof. Dr. Oliver Semler
- 2013 – Prof. Dr. Gesine Hansen and Team
- 2015 – Prof. Dr. Heymut Omran
- 2015 – Prof. Dr. Stephan Lobitz (Recognition award for newborn screening for sickle cell anemia)
- 2016 – PD Dr. Sven Thoms, Prof. Dr. Ekkehard Wilichowski and Team
- 2017 – Prof. Dr. Michael Schmeißer and Team
- 2018 – Dr. Ulrike Hedrich Klimosch and Team
- 2019 – Prof. Dr. Björn Schumacher
- 2020 – Prof. Dr. Martina Rauner and Dr. Ulrike Baschant
- 2021 – Prof. Dr. Thorsten Marquardt, Dr. Julien Park and Prof. Dr. Karl Kunzelmann
- 2023 – Prof. Dr. Simone Mayer and parents of the initiative PCH-Familie e. V.
- 2024 – Prof. Dr. Alessandro Prigione/ UK Düsseldorf and Prof. Dr. Markus Schülke/ Charité – Universitätsmedizin Berlin
Following-up: Where do the research projects stand today?
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Research Award 2008 – An update
Overcoming boundaries and saving lives with the “turbo enzyme”
Lysosomal storage diseases – this abstract term conceals thousands of fates. The symptoms are severe, the prognosis extremely poor: most patients die in childhood. Journalist Sandra Arens asked the first award winners, Prof. Dr. Volkmar Gieselmann and Prof. Dr. Hans-Joachim Galla, how their research has developed since the 2008 award.
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Research Award 2009 – An update
As vulnerable as a butterfly – New drugs against epidermolysis bullosa
Even a hug can be dangerous – just like playing in the garden or riding a bike. People with a severe form of the skin disease epidermolysis bullosa have such fragile skin that even the slightest irritation caused by movement and friction can lead to painful blisters and wounds. In Germany, between 1000 and 2000 people are affected.
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Research Award 2010
How a drug defeats a rare form of muscle weakness
It happens from one second to the next. Legs or arms are paralyzed for minutes – perhaps even several hours. The attacks come and go. But over the years, muscle atrophy often develops, making walking impossible. Hypokalemic periodic paralysis (HypoPP) is the name of the disease, which only affects one person in a hundred thousand.
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Research Award 2012
New therapy for subtype of brittle bone disease
Bones – as delicate as glass. This is the core symptom of osteogenesis imperfecta, also known as brittle bone disease. Sometimes all it takes is a careless movement, a twitch, a gentle bump and a bone breaks. Many of those affected have to sit in a wheelchair, are of short stature and have deformities of the spine.
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Research Award 2013 – An update
Growing ‘scavenger cells’ and saving lives: New therapeutic approach for severe lung disease
A new gene therapy could make it easier to treat a serious lung disease: pulmonary alveolar proteinosis. Professor Gesine Hansen and her team received the 2013 Eva Luise Köhler Research Award for Rare Diseases for their findings.
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Research Award 2015 – An update
When cilia remain motionless: Researchers identify 40 genetic defects
Runny nose, cough, middle ear infections – what sounds like a cold can in rare cases be a sign of primary ciliary dyskinesia, a dangerous genetic disease. Early detection is the be-all and end-all for treatment. Pediatrician Professor Dr. Heymut Omran and his team have researched how this can be achieved.
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Recognition Award 2015 – An update
Sickle cell disease – newborn screening saves lives
Extreme pain, anemia, organ damage and life-threatening infections – the list of symptoms of sickle cell disease is long. Only early detection can help.
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Pediatrician Dr. Stephan Lobitz played a key role in ensuring that screening for sickle cell disease was included in regular newborn screening in Germany. -
Research Award 2018 – An update
Help for children with severe early childhood epilepsy
Sometimes they are just brief moments – tiny muscle twitches, a stare into nothingness. And there are severe episodes: convulsions that shake the body, fainting, fear, confusion. Epilepsy comes out of the blue. It takes control of your life from one moment to the next. The insidiousness of the disease: it cannot always be treated.
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Research Award 2019 – An update
Stopping rapid aging? Hope for children with a rare genetic defect
Calcified arteries, cataracts, kidney failure – children with Cockayne syndrome have massive signs of old age even at a young age. There is currently no cure, and the lives of patients with the disease end early. Thanks to Professor Björn Schumacher’s research, young patients could be helped in the future.
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Research Award 202o – An update
Stopping ossifications: A small protein with great potential
In FOP patients, muscles and tendons gradually ossify. This very rare genetic defect is currently untreatable and has a poor prognosis. Two researchers have developed a new therapeutic approach that could inhibit bone growth. For their work, they have been granted the 2020 Eva Luise Köhler Research Award for Rare Diseases.
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