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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NATIONAL REGISTER FOR RARE DISEASES - NARSE "A decision with foresight"

The Innovation Committee at the Federal Joint Committee (G-BA) is funding the FAIR4Rare project as one of 32 new projects in the field of health services research. It supports the accompanying evaluation of the development process for an open National Registry for Rare Diseases (NARSE). 

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Versorgungsforschung Innovationsausschuss beim G-BA empfiehlt TRANSLATE-NAMSE für die Regelversorgung

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Press releases Umfassende Studie zu pandemiebedingten Versorgungslücken

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