Małgorzata (Gosia) Kośla is the founder of the PACS2 Research Foundation and mother of twin daughters, Lena and Zuzanna. In February 2022 Lena was diagnosed with PACS2 syndrome, an ultra-rare neurological disorder. At the time, there were virtually no scientific literature or clinical research on the condition. After 3 years of the foundtion’s work, there are 50+ scientists and clinicians working in 10+ projects covering basic and translational research, as well as clinical studies, from such institutions as University of Oxford, Boston Children’s Hospital, Charles River Laboratories or Medical Universities in Warsaw and Bialystok, and many others.

The Koślas are passionate advocates for families dealing with ultra-rare conditions, striving to foster interdisciplinary and international cooperation in the field. Fundacja PACS2 Research Foundation is i.a. a member of ePAG of European Reference Network EpiCARE or Warsaw Health Innovation Hub run by Polish Medical Research Agency.