Who we are?
The non-profit organization dedicated to drive first-ever treatment development for ultra-rare neurodevelopmental disorder (Development and Epileptic Encephalopathy 66) caused by mutation in PACS2 gene. We strive to enhance the quality of life for affected patients and their families. We anchor our efforts on interdisciplinary and international cooperation, buidling and fortifying patient-scientists-clinicists partnership and sharing experience with other research foundations.
Currently run RESEARCH: LINK
Privately we are parents of Lena who is impacted by the mutation. You can follow us on Instagram @misjalek.
The foundation is registered in Warsaw, Poland. Nevertheless, we operate worldwide for all patients affected by the disorder.
--
Registry information and annual statement:
Registered in Warsaw, Poland
Polish National Registry (Krajowy Rejestr Sadowy) number: 0000970620
Tax Identification Number (NIP): 5213967421
Board:
Malgorzata Kosla - President
Piotr Kosla - Vice-President
Scientific Board: LINK
--
Foundation statute (Polish only):
--
Annual statements:
2022 & 2023 (Financial statements, simplified, in USD - English):
2023 (Financial statements - official documents in PLN in Polish):
* percentage of revenue invested in research: 98%
2022 (Financial statements + Activities' Report for Polish Ministry of Health - official documents in PLN in Polish):
* percentage of revenue invested in research: 94%