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STELLUNGNAHME ZUM ECKPUNKTEPAPIER

Krankenhausreform: Seltene Erkrankungen nicht vergessen!

Am 10. Juli 2023 haben sich Bund und Länder auf die Eckpunkte für die Krankenhausreform geeinigt. In diesem Zusammenhang appelliert die Eva Luise und Horst Köhler Stiftung an die politisch Verantwortlichen: Menschen mit Seltenen Erkrankungen dürfen nicht vergessen werden!

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.

Filmporträt Familie Kiefer

Diagnosis NEDAMSS: When children irrecoverably forget what they have learned

Johnny is just one year old when he and his parents are diagnosed with NEDAMSS (NEurodevelopmental Disorder with regression, Abnormal Movements, loss of Speech, and Seizure). There are only 21 affected children worldwide at this time. Without treatment options, the very rare disease will gradually take away everything Johnny has learned up to this point.

Research Award

Call for applications for the 16th 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 granting a research award for rare diseases since 2008. Applications for the 16th research award, which will be awarded in Berlin in May 2024, can be submitted until September 17, 2023.

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.

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Horst Köhler auf dem Display einer Sony Kamera

Alliance4Rare

gemeinsam Zukunft schaffen

Film project by Britta Wauer

Showing face for more research on rare diseases

In the midst of the pandemic, filmmaker Britta Wauer portrayed companions and supporters of our foundation's work. In twelve episodes, the Grimme Award winner explores what drives people who work in research and science, in treatment rooms, meeting rooms or at their desks at home to ensure that (their) children with rare diseases can hope for urgently needed therapies.

Zur Filmübersicht

POSITIONSPAPIER

22.09.2023

Außerklinische Intensivpflege: Umsetzungsprobleme geben Anlass zur Sorge

PCH-Familie e.V und 19 weitere Verbände berichten von besorgniserregenden Entwicklungen in der außerklinischen Pflege und fordern Nachbesserungen am Intensivpflegegesetz

Article

27.04.2023

Hier finden Betroffene Hilfe - Was Zentren für Seltene Erkrankungen leisten können

36 Zentren für Seltene Erkrankungen gibt es mittlerweile bundesweit. Im Magazin "Leben mit..." erläutert Prof. Dr. Annette Grüters-Kieslich erläutert Aufbau und Arbeit dieser wichtigen Einrichtungen. Hier finden Betroffene Hilfe, wenn es keine sichere Diagnose gibt oder Expertinnen und Experten gebraucht werden.

PATIENT STORY

27.04.2023

MCAS – eine Krankheit, die es offiziell nicht gibt

Die Diagnostik von MCAS ist oft schwierig. In diesem Erfahrungsbericht erzählt ein Patient seine Geschichte. Hoffnung für Betroffene gibt jetzt die MAGELLAN-Studie.

BEITRAG

17.04.2023

Die Waisen der Medizin - Editorial von Eva Luise Köhler im Magazin "Leben mit… Seltenen Erkrankungen"

Seltene Erkrankungen sind häufig! Im Magazin 'Leben mit...' macht Eva Luise Köhler auf die Situation der vier Millionen in Deutschland betroffenen Menschen aufmerksam und betont: Für die meisten Erkrankungen gibt es noch keine Heilung, oft nicht einmal einen Therapieansatz. Wir müssen dringend handeln!

Alliance4Rare

17.03.2023

Research and medical care are inseparable for rare diseases

In an interview with Themenbote Medizin, Professor Dr. Annette Grüters-Kieslich, Chairwoman of the Foundation's Board of Directors, introduces the Alliance4Rare research initiative. She explains what the alliance is all about, where its focus lies and how researching pediatricians are specifically supported.

Article

24.02.2023

Who is doing research for the orphans of medicine? "Far too few!" - Eva Luise Köhler in +3 Magazine

Who is doing research for the orphans of medicine? "Far too few!" is the answer given by Eva Luise Köhler in the current +3 Magazine, a supplement of the Süddeutsche Zeitung. For fatally, the immense need for effective medical help in the field of rare diseases has long been matched by a lack of research activities.

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