ABOUT THE FOUNDATION
The idea of establishing a foundation came to Urszula Jaworska's husband, actor Czesław Baranowski , when she was still in hospital. "We have to do something about this," he said. "We can't waste the experience we've gained so hard." He organized a charity concert at Urszula's home theater, the Syrena Theater in Warsaw, the entire proceeds of which were donated to Urszula's treatment at the Hematology Clinic. On October 13, 1997 , almost on the anniversary of the fateful verdict, a concert was held for people with leukemia, inaugurating the Urszula Jaworska Foundation . All the artists performed for charity. TV presenters from Dwójka sold gilded daffodils, collecting money from viewers. When the flowers ran out, those who had already bought them gave them to the sellers so that more money could be transferred to the foundation's account.
For twenty years as President, he helped Polish patients, supported and directed them on how to fight the disease and the surrounding reality. It is thanks to his involvement, among others, that our Foundation today is a dynamic organization supporting patients in many different diseases.
Czesław Baranowski died on August 18, 2018 - after a long and difficult battle with pancreatic cancer.
Czeslaw Andrzej Baranowski
First President of the Management Board
Urszula Jaworska Foundation
In 1997, Urszula Jaworska was the first patient in Poland to undergo a bone marrow transplant from an unrelated donor. This pioneering procedure in the history of Polish medicine took place at the Hematology Clinic of the Silesian Medical University in Katowice, and was performed by Professor Jerzy Hołowiecki and his team. While still a patient, she became the Founder of the Urszula Jaworska Foundation.
We are the precursors and co-authors of the amendment to the Transplantation Act, as well as the development of the Bone Marrow Donor Registers - when we started building the donor database, virtually no one had heard of transplants. For many years, our Foundation was the largest Bone Marrow Donor Bank in Poland in terms of the number of registered people. It is thanks to the personal commitment of Urszula Jaworska and the entire Foundation team that the idea of bone marrow donation has become so popular in Poland. In order to obtain potential bone marrow donors and funds for research, the foundation carried out multimedia campaigns and educational programs in schools, universities and military units. The Foundation's register currently includes over 11,000 bone marrow donors and has already recorded 34 successful bone marrow transplants from donors registered with the Foundation. We have been cooperating for many years with several Hematology Clinics, Regional Blood Donation Centers and laboratories dealing with HLA tissue typing throughout the country. We are currently no longer registering new donors.
In the first years of its activity, the development of the Register of Unrelated Bone Marrow Donors was the main area of the Foundation's activities. Since March 2008, the Urszula Jaworska Foundation has been implementing its first pilot program of expert support for patients and their families, mainly cancer patients, under the name "SUPPORT GROUPS". There were 14 meetings attended by over 1,000 patients and their family members. Using the experience gained in subsequent years of operation, the foundation began to provide broader assistance to patients suffering from chronic diseases, including: Multiple Sclerosis, Hepatitis C, diabetes and sepsis. The areas of this activity concerned many diseases and focused mainly on direct assistance to patients and their families.
Currently, one of our main goals is to initiate and implement projects aimed at pro-patient systemic changes in health care. Our model of coordinated care in multiple sclerosis (KOSM) was one of the first solutions of this type in Poland, before solutions related to the coordination of patient care became more common. Thanks to the enormous effort of our team, the National Health Fund managed to implement a 5-year pilot of this project. We initiated and were involved in the creation and implementation of the Government Health Policy Program "DAA treatment of chronic hepatitis C patients incarcerated in penitentiary institutions".
Our many years of experience allow us to conduct inter-ministerial activities and cooperate with government institutions, local governments and the private sector. In cooperation with medical facilities, we conduct free HCV testing and other preventive campaigns. We have completed many award-winning, nationwide social campaigns conducted in the press, television and the Internet. Over almost 30 years of activity, we have learned how to recognize the needs of chronically ill patients. Be with them in difficult times and teach them how to deal with the problems that await them. We try to share the acquired knowledge with patients and their relatives during workshops and meetings we organize.
We are the initiator and partner of the website http://pacjentwbadaniach.abm.gov.pl. The website operated even before the Medical Research Agency was established and was managed by the Polish Development Fund. In the area of clinical trials, we also educate patients and build tools to support clinical trial participants. We are the authors of a mobile application supporting medical staff and patients participating in clinical trials carried out by the University Center for Clinical Research Support in Poznań. Each of the Foundation's employees is also involved in giving opinions on applications for permission to conduct clinical trials for the Supreme Bioethics Committee or Local Bioethics Committees.
We belong to the World Patients Alliance and the World Hepatitis Alliance.
Our mission
Initiate and support pro-patient changes
in the healthcare system to give it a holistic dimension
Vision
Ensure that every patient receives care that covers all areas of their needs
Activities
Health Education: Raising health awareness through social campaigns and educational activities aimed at patients and their families.
Patient Support: Implementation of projects supporting patients in the context of the entire health and social care system.
Supporting and Creating Innovation: Promoting and supporting innovative forms of treatment, clinical trials and solutions supporting participants and medical personnel involved in research.
Collaboration with Experts: Actions consistent with best medical practices and Evidence-Based Medicine (EBM).
It's as if we had found an incredibly effective technique for saving people from drowning, but after pulling the person out of the water we left him coughing, half-suffocated, to his fate, feeling that we had done our part...
...we do more!
Fitzhugh Mullan
Most important projects
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Bone Marrow Donor Register Development Program,
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Educational Program – Organ Transplantation,
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The Foundation initiated the amendment of the Transplantation Act, which resulted in the development of, among other things, marrow donor registers and resulted in an increase in the number of unrelated donors,
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Support groups for cancer patients and their families, for people before and after bone marrow transplants, for HCV patients, for brain cancer patients (meetings with actors, performances and CDs),
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Support groups for brain tumor patients, organizing rehabilitation and recreation stays
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release of the album "Bajnutek, i.e. songs with soul",
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co-financing of brain tumor patients from the Children's Health Center and the construction of the Playground at CZD,
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Workshops for patients with chronic myeloid leukemia,
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Social Campaign "Leukemia - check if it's in your blood" - A nationwide educational campaign initiated by the Urszula Jaworska Foundation and the Institute of Patient Rights and Health Education, under which the "School of Life with Chronic Myeloid Leukemia" project was created - workshops for patients and their families,
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Workshops for patients with multiple sclerosis from 2012 to 2015,
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A series of workshops addressed to hepatologists and patients with HCV - 2013,
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Psychological workshops for patients with hemophilia complicated by inhibitors - Warsaw 2014-2015. Program conducted jointly with the Institute of Hematology and Transfusion,
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The 2014 edition of an educational calendar dedicated to the memory of actor Maciek Kozłowski "Who do you want to be for your liver",
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Publishing an educational calendar with actors and athletes dedicated to education about multiple sclerosis
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The nationwide campaign "Wake up while the HCV virus is dormant", "akademiawzwc", "Let yourself be infected with knowledge, don't be infected with HCV" and the continued campaign #czasNasGoni, which takes place via the social media "Pan Wątroba" www. facebook.com/PanWatroba, Instagram, TikTok, WhatsUp and YouTube,
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A series of artistic meetings for patients of the Oncology Center - meetings with artists and actors taking place every two weeks from 2014 to 2017,
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"Social Ranking of Hospitals" - a pilot project of hospital research in the context of the quality of patient care and patient satisfaction with the services provided by hospitals. Five hospitals from four voivodeships signed up for the pilot project. – from 2017 to 2018,
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Issuance of system reports for creating coordinated care in multiple sclerosis and diabetes.
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We were one of the first organizations to join the "Patient Connects Us" project conducted by the Patient Ombudsman. Twice a month, our employees volunteered at the hotline in the Commissioner's office, providing support to patients with specific diseases,
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Initiation of the website http://pacjentwbadaniach.abm.gov.pl, which educates about clinical trials. The website was created thanks to the cooperation of non-governmental organizations, the science sector, public administration and the biotechnology and pharmaceutical industries. Patients, doctors and non-governmental organizations working for health care can find detailed information about standards, procedures and requirements regarding the process of joining clinical trials, presented in an accessible way. The project was initially coordinated by the Polish Development Fund - currently the Medical Research Agency, and the honorary patronage over the website and the campaign was provided by the Patient Ombudsman and the Ministry of Entrepreneurship and Technology,
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District Resident Support Point - #StopCovid19. The project was implemented for several months thanks to the support from funds received from NIW-CRSO as part of the Emergency Support Program for Non-Governmental Organizations to Counteract the Effects of COVID-19. The point operated (to a lesser extent) as part of the foundation's activities for 12 months after the end of financing,
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Anti-HCV tests for employees and juveniles of juvenile correctional facilities and shelters - approximately 1,400 tests in 2020,
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Anti-HCV tests for employees and officers employed in prisons - 2020/2022, over 10 thousand. tests,
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Anti-HCV tests in primary health care facilities (over 90 cities in the country - Świat Zdrowia network and CMD Siedlce) - 2020/2024, over 30,000. tests,
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Release of the report in 2021: "The road to eliminating HCV infections in penitentiary institutions - an overview of systems in selected European countries and recommendations for Poland",
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Together with our experts and the National Health Fund, we built a pilot project for coordinated care in multiple sclerosis (KOSM). The project was approved by the Ministry of Health and underwent a 5-year pilot,
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Together with the Medical University of Poznań. Karol Marcinkowski, we were part of the consortium that created it University Clinical Research Support Center. We are the authors of a system for managing clinical trials, a mobile application supporting clinical trial participants and a website with a search engine for clinical trials carried out by CWBK in Poznań.
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Carrying out public consultations for the World Bank on long-term care. In 2023 The Foundation carried out five large public consultations for the World Bank. The meetings were attended by residents of the rural commune, non-governmental organizations from Poland, representatives of the authorities of the capital city of Warsaw and administrative authorities of Warsaw districts. The last two meetings were intended for city and commune authorities and institutions involved in shaping and implementing long-term care policy in Poland.
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Co-organizing the #ZwolnijDlaZdrowia event in 2023 and 2024.
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Implementation of the Government Health Policy Program "DAA treatment of chronic hepatitis C in patients incarcerated in penitentiary units".
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Implementation of the first national seminar "Sepsis - a vision of the future" in 2024.
