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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.

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Currently run RESEARCH: LINK

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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. ​

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We are active members of European Patient Advocacy Group supporting European Reference Network EpiCARE, and founders of Complex and Rare Epilepsies Alliance - first european association for rare epilepsies. 

We are patient representatives in Rare Disease Council at Polish Ministry of Health and Warsaw Health Innovation Hub of Polish Medical Research Agency.

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Registry information and annual statement:

R​egistered in Warsaw, Poland

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Polish National Registry (Krajowy Rejestr Sadowy) number: 0000970620

Tax Identification Number (NIP): ​5213967421

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Board

Malgorzata Kosla - President

Piotr Kosla - Vice-President

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Supervisory Board:
Justyna Karwat - Chairman & the parent of a child affected by PACS2 syndrome
Zbigniew Karwat - the parent of a child affected by PACS2 syndrome

Dominik Cysewski, PhD - Vice-Chairman & the neurobiologist, proteomics expert

Kacper Lukasiewicz - the neurobiologist, animal models expert

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Scientific TeamLINK​

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Foundation statute (Polish only) - updated in August 2024:

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Privacy policy: 

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Annual statements:

2024 (Financial statements and Substantive report - official documents in PLN in Polish):

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All reports are also published in the database of Polish public benefit organizations' reports of the National Freedom Institute (Narodowy Instytut Wolnosci).​ In case you would need statement in English, please write to us: info@pacs2research.org

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2022 & 2023 (Financial statements, simplified, in USD - English):

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2023 (Financial statements - official documents in PLN in Polish):

* percentage of revenue invested in research: 98% 

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2022 (Financial statements + Activities' Report for Polish Ministry of Health - official documents in PLN in Polish):
* percentage of revenue invested in research: 94% 

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rodzina Kosla.jpg

ABOUT US >

We are Malgorzata & Piotr, parents of little twin girls - one of them, Lena, is impacted by PACS2 mutation. We strive for finding the treatment for Lena and all children suffering from this syndrome.

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If you want to get engaged in research, please contact us.

If you are a caregiver of PACS2 child - do not hesitate to write to us in case of any questions - we will try to help.

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