Who we are?
The non-profit organization dedicated to drive treatment development and improve lives of children with ultra rare mutation in PACS2 gene, through scientific research funding. We believe that thanks to our and other similar organizations' work, we will change the reality of people suffering from genetic syndromes and in future dedicated treatment will be widely available for rare conditions.
Privately we are parents of Lena who is impacted by the mutation. You can follow us on Instagram @misja_cud.
The foundation is registered in Warsaw, Poland. Number in Polish National Registry (Krajowy Rejestr Sądowy): 0000970620.
Nevertheless, due to the fact that the mutation is ultra rare and there are children impacted around the globe, we operate worldwide. Currently we are during talks with research centers both in Europe and US.
Our work would not be possible without critical advice from our Scientific Board (learn more).
Our current ROADMAP: LINK TO ROADMAP
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Registry information and annual statement:
Registered in Warsaw, Poland
Polish National Registry (Krajowy Rejestr Sadowy) number: 0000970620
Board:
Malgorzata Kosla - President
Piotr Kosla - Vice-President
Scientific Board: LINK
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Foundation statute (Polish only):
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Annual statement 2022 (Polish only):