PATIENT STORY When cold paralyzes the body - Living with rare muscle disease

Matthias suffers from the so-called Eulenburg paramyotonia congenita - a hereditary sodium channel disease. Only one in 180,000 people in Germany is affected. At low temperatures, his muscles stiffen within minutes. For a long time, patients like him were helpless facing their fate. But then a team of researchers made a groundbreaking discovery.

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ALLIANCE4RARE: CLINICIAN SCIENTISTS IN PORTRAIT Dr. Felix Boschann, Charité Universitätsmedizin

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.

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Event Note 2nd Gene Therapy Forum: Challenges and Opportunities in Rare Genetic Diseases on September 17

What are the challenges in finding a diagnosis for rare genetic diseases? Which factors can be decisive for the success of a gene therapy? These questions will be addressed at the 2nd Forum on Gene Therapy for Medical Professionals on September 17, 2022.

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Event Note "Rare Disease Day" at the Augsburg Center for Rare Diseases on September 24, 2022.

The Augsburg Center for Rare Diseases cordially invites to the "Rare Disease Day" on September 24. Among the speakers are Eva Luise Köhler and Prof. Dr. Annette Grüters-Kieslich.

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INTERVIEW "We learn a lot from 'the rare' for the treatment of common diseases. Everyone benefits from this!"

In the BPI Publication "Themendienst" about Rare Diseases, Prof. Dr. Annette Grüters-Kieslich describes challenges for people with rare diseases and points out approaches for improvements. And she emphasizes: "We learn a lot from the rare diseases for the treatment of common diseases. Everyone benefits from this!"

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Online survey until October 31 Study: Rare diseases during the pandemic

How did people with rare diseases fare during the Corona pandemic? An online survey as part of the "RESILIENT-SE-PAN" project funded by the Eva Luise and Horst Köhler Foundation aims to uncover gaps in care and identify pointers for improving care. You are cordially invited to participate!

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