Modern medicine cannot advance without cooperation with patients. They are the ones who best understand the difficulties they face every day. That is why at Łukasiewicz – PORT we have initiated a dialogue with patient organizations. We want the solutions developed at the institute to be truly tailored to patients’ needs.
Both scientists and representatives of patient organizations recognize that there is a gap between basic research and clinical practice. For researchers, this means prolonged implementation processes; for patients — a lost chance for longer or more comfortable lives. And time is their most valuable resource. Therefore, mechanisms are needed to shorten the path “from the laboratory to the patient’s bedside.”
To improve cooperation, enhance information flow and — most importantly — listen carefully to one another, the first meeting with patient organizations was held on 12 September at Łukasiewicz – PORT. This time, most of the invited foundations and organizations represented patients affected by rare and ultra-rare diseases. This gave the meeting a special character — on the one hand, it highlighted the challenges faced by these groups; on the other, it underscored the tremendous potential for cooperation between scientists and patient organizations in areas where innovative research and new therapies are urgently needed.
The meeting was practical in nature — the program included presentations by Łukasiewicz – PORT researchers, talks by patient organizations, and a presentation on research funding. The organizers also wanted to create a space for informal conversations and direct networking.
Medicine of the Future at Łukasiewicz – PORT
The Wrocław institute offers extensive laboratory facilities, specialized staff, a broad network of international collaboration, and access to major grants focused on the development of precision medicine. However, the creation of new therapies also requires medical data and close cooperation with patients and their physicians.
Recently, the Center of Excellence for Precision Phenotyping and Biological Data Biobanking (P4Health) was established within Łukasiewicz – PORT. Its mission is to advance personalized medicine by precisely tailoring therapies to individual patients’ conditions.
Patients with rare diseases often remain invisible to the traditional healthcare system. Their families fight to initiate research and improve their loved ones’ quality of life. Łukasiewicz – PORT has the research infrastructure necessary to develop modern diagnostic methods at the molecular level, including for rare diseases.
“This is the first — but certainly not the last — meeting between our scientists and patient organizations. Both sides have many questions and expectations toward each other, and above all a shared need to better understand their perspectives. Such events create a space for dialogue, which may later translate into joint research or health-promoting initiatives,”
said Daria Stankiewicz-Chodaczek, responsible at Łukasiewicz – PORT for the PPIE area (patient and public involvement and engagement).
Patient Organizations as Partners in Research and Grants
The representatives of patient organizations who presented their activities at Łukasiewicz – PORT share determination and the ability to build bridges between patients and scientists worldwide.
Małgorzata Kośla founded the PACS2 International Research Foundation with her husband three years ago. Today, the foundation has in vivo and in vitro models for PACS2 syndrome research, collaborates with centers worldwide, and runs several projects.
“We connect people — our foundation now includes 21 research teams in 11 countries. The path ‘from the laboratory to the patient’s bedside’ is difficult because there are few people who understand both worlds. That’s why a gap exists, and foundations can help fill it,” she emphasized.
Justyna Walczuk, founder of the MEK2 Research Foundation supporting people with CFC4 syndrome, added:
“We want to strengthen the voice of patients in Poland.”
The organization works to initiate research, raise awareness, and build support networks for families.
Similarly, Dr Aldona Chmielewska, president of the AGO Alliance Poland research foundation studying the Argonaute syndrome, stressed:
“The role of patient organizations is to identify the gaps that need to be filled in translational research. We fight to improve quality of life.”
Two Worlds — One Goal
Dr Anna Kordala, director of the CURE HSPB8 foundation, presented both the families’ perspective and the scientific viewpoint. As a researcher collaborating closely with patient organizations, she understands both sides well:
“Scientists are often afraid to talk to families of patients. They believe they know best what patients need. Meanwhile, families are experts and must be heard. Scientists have their priorities — publications and grants — while patients care most about treatments and access to data. We are here to fill this gap and discuss how research can be translated into concrete solutions.”
She also noted that for many people, scientific work remains an enigma. Science communication — showing its practical value — is essential. Meetings like this help break barriers and build mutual trust.
Associate Professor Tomasz Prószyński, PhD, leader of the Synaptogenesis Research Group at Łukasiewicz – PORT, emphasized that scientists’ reluctance to engage with patients or their foundations cannot be accepted:
“Dialogue between scientific and patient communities, and a willingness to understand each other, is absolutely essential.”
However, scientists often present unpublished results, which are typically confidential. Revealing such preliminary data to competing labs or publicly can expose researchers and their institutions to significant risks.
“Science inherently includes competition — research teams race to publish new discoveries. We count on patient organizations to understand this perspective,” explained Associate Professor Prószyński.
“Only dialogue built on mutual understanding will accelerate research and lead to the development of new therapeutic methods.”
