PACS2 Research Foundation

Ethics or Money?

During the last week conference LifeScience4EU organized by Klaster LifeScience Krakow under Polish presidency of the Council of the European Union, Marco Greco from European Patients'​ Forum emphasized in his speech that patient engagement in research co-creation should be beyond question, especially considering the rich cultural values we uphold in Europe.

While we fully agree with this, our representative Malgorzata Kosla also pointed out that patient involvement is not only an ethical imperative but also makes economic sense. No one asks more questions about the practical application of innovation, and no one is more motivated to ensure treatments actually reach patients - as fast as possible, while ensuring all safety measures are in place. And as was highlighted throughout the sessions - in the EU, we don’t struggle with innovation as much as we struggle with translating ideas from bench to bedside, and with bringing clinical trials to EU.

In the conference the challenges and opportunities facing Life Sciences in EU were discussed from every possible angle. It was truly inspiring to listen to other speakers and to be part of these discussions, and even more so that our voice - coming from a patient start-up-like NGO - was heard and valued.

Thank you for having us Klaster LifeScience Krakow and looking foreward to the post-conference report!



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Organizers & Partners of the event: Klaster LifeScience Krakow, Ministerstwo Nauki i Szkolnictwa Wyższego, Uniwersytet Jagielloński w Krakowie, Urząd Miasta Krakowa, European Union

We are honored to join the Warsaw Health Innovation Hub as a member, alongside institutions such as Polish Association for Good Clinical Practice (GCPpl), INFARMA - The Employers’ Union of Innovative Pharmaceutical Companies, Fundacja Urszuli Jaworskiej, American Chamber of Commerce in Poland and 5 other esteemed insitutions (more: https://whih.abm.gov.pl/whi/aktualnosci-1/3041,10-nowych-Czlonkow-dolaczylo-do-Warsaw-Health-Innovation-Hub.html)

The Warsaw Health Innovation Hub is an initiative of the Polish Medical Research Agency (Agencja Badań Medycznych) — a unique platform designed to foster collaboration between public, private, and scientific institutions to strengthen Poland's innovation in the biomedical sector.

We are excited about this opportunity and grateful that innovative patient organizations have a seat at the table.

Reflecting on our journey, we often feel like we’re just doing what’s necessary for our daughter and other PACS2 kids. But the “Unlocking Hope for the Ultra-Rare” conference was a moment to truly appreciate the impact we’ve made. Organizing it in a team of 1.5 people 😉 was not a piece of cake, but every moment of hard work was worth it.

Now that the event is behind us, we want to extend our heartfelt thanks to everyone who made it possible:

- Krzysztof Szczałuba, Dominik Cysewski, Kacper Lukasiewicz – Thank you for always being available to brainstorm ideas and offer support throughout the preparation.
- The PACS2 researchers team – Your dedication, openness, and passion not only bring hope but we believe, inspire each other for pushing forward for the benefit of patients.
- Daria Julkowska – Thank you for attending our (yet!) niche conference, for sharing invaluable insights from a European perspective, and for challenging us to address the gaps that remain. And Tomasz Grybek – Even though you couldn't join us in person, your engagement and support were truly felt. And I also believe we will collaborate much more in the future.
- Warszawski Uniwersytet Medyczny for hosting the event. Special thanks to Mr. Piotr from the multimedia team, whose help saved us from a ton of stress.
- Our volunteers who supported us on site - my amazing colleague Magda, the five fantastic women: Klara, Sara, Aneta, Ula & Ania from Polish Centralny Ośrodek Informatyki, and Janek, our photographer – we couldn’t have done it without you!
- Our sponsors: Charles River Laboratories, AstraZeneca, and Takeda – Your support for building an innovative community for rare diseases in this part of Europe demonstrates a genuine commitment to supporting patients with rare conditions.

The event may now be a memory, but the impact and hope we’ve unlocked will continue to drive us forward.

> Photo credits: Jan Szorc