Meeting of Ultra-rare and undiagnosed Platform

CREATIC presented its activities at the Ultra-Rare and Undiagnosed Platform meeting. Kateřina Slabá, the founder of the Ambulance for undiagnosed child patients, also spoke, who presented the story of one of the patients.

December 2023

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The Czech Association for Rare Diseases organized a meeting of the Ultra-Rare and Undiagnosed Platform, which was also attended by CREATIC, led by Regina Demlová, who presented the project. It was about the fact that in the laboratories at the Faculty of Medicine of Masaryk University we were already able to develop and also produce two medicinal products for cell therapy in the GMP premises. In cooperation with the CZECRIN infrastructure, we can get them to the patient through clinical studies. Thanks to our foreign partners as part of Teaming for Excellence, we will strengthen our know-how also in the field of gene therapies.

The search for genetic links is also an important part of the activities of the Ambulance for undiagnosed pediatric patients, which has been operating since September this year on the grounds of the Brno University Hospital and will work closely with CREATIC.

Kateřina Slabá, who is behind the creation of the ambulance, spoke at today's meeting about the need for a multidisciplinary approach in the care of patients without a diagnosis. She presented the story of one of her patients who, thanks to a comprehensive follow-up examination, managed to end his diagnostic odyssey after 13 long years.

We believe that thanks to mutual cooperation, there can be a little more such happy endings.

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