PACS2 Research Foundation

I never imagined I’d cook dinner with the Polish Minister of Health — but our missionCURE (misjaLEK) keeps surprising us in so many ways.

As part of the Fundacja Wielka Orkiestra Świątecznej Pomocy annual charity, four incredible women — Anita Demianowicz, Anna Hernik, Paulina Socha-Jakubowska, and Aleksandra Kakol — won an auction to cook with Minister of Health, Izabela Leszczyna (Ministerstwo Zdrowia). More than just a symbolic gesture, it became a powerful way to start a meaningful conversation about the healthcare system — this time, from the perspective of patients and caregivers. The dialogue began during an official meeting at the Ministry of Health, and for the cooking session itself, they brought together 20 healthcare activists — patients, caregivers, and physicians.

I was honored to join the dinner and, together with Anita and Justyna Walczuk from MEK2 Research Foundation, bring the voice of rare disease families to the table.

Three hours of deep, complex discussions touched on many aspects of the Polish healthcare system — especially pediatric care, oncology, and rare diseases. I had the opportunity to highlight the challenges faced by patient organizations striving to engage in research for ultra-rare diseases. The Minister’s openness to change offers real hope.

And the outcome? Real actions are already underway. Some issues will take time, but others don’t require broad legislative changes. One promising development is the planned creation of a Patient Consultancy Council — a next step to systematically address key challenges, one by one.

Fingers crossed. Change is coming.

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One of the group’s postulates is to allow parents to stay with their children in intensive care units, so children get best psychological support - parental love - and don't die alone. You can support the petition on this matter here: https://www.petycjeonline.com/petycja_w_sprawie_zapewnienia_rodzicom_dzieci_hospitalizowanych_w_oddziaach_intensywnej_terapii_caodobowego_towarzyszenia_rodzica

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Support our Foundation work!

> https://www.siepomaga.pl/misja-lek/

or https://www.pacs2research.org/donate

or if you are employed in Poland, by dedicating 1,5% of your PIT to our Fundacja PACS2 Research Foundation - KRS: 0000970620.