The situation of patients with rare diseases from Ukraine who fled the war (2022)

The report from our survey research among about 30 Ukrainian patients and patient’s caregivers whom we helped and who are currently residing in Poland and other European countries about their current situation, unique perspectives, access to treatment and needs. The results of this research allowed us to understand their situation even better and adapt our humanitarian activities to their needs.

Report available in English and Ukrainian – click here to download: [ENGLISH], [UKRAINIAN].

Plasma – life depends on it (2021)

The report on plasma donations and the use of plasma derivatives in Poland. It presents the current situation in Poland: we discuss the Polish system of plasma collection compared to neighboring countries (Czech Republic, Hungary), we indicate groups of patients for whom PDMPs treatment is crucial and needs to be reimbursed. We also show what the situation in Europe looks like, what the trends are for the coming years, and therefore what challenges Poland faces in order to be able to provide patients with life-saving treatments.

Report available in English and Polish – click here to download: [ENGLISH], [POLISH].

Reports on the foundation's activity

PatientAdvocacy.Academy 2025: Rare Leaders

The report summarizing the 8th edition of PatientAdvocacy.Academy – a three-week online course for leaders of patient organizations. This time, the program was dedicated to building patient organizations. Each day, we focused on a different aspect essential for running an effective organization and advocating for patients’ rights. Our goal was to equip participants with essential knowledge and practical skills they could immediately apply in their daily work. Notably, this edition of PAA marked a major step forward, with record participation, broad representation, and strong engagement.

Report available in English – click here to download: [ENGLISH]

PatientAdvocacy.Academy 2024: Mastering Communication

Report summarizing the 7th edition of PatientAdvocacy.Academy – a three-week online course for leaders of patient organizations. The 2024 edition focused on mastering communication within patient organizations. We explored communication strategies for different target audiences, techniques for influence, and the creation of engaging content. All of this was based on case studies, collaborative work in online circles, and experience sharing. We are proud of the progress made by our participants! We encourage you to read the report and explore the details.

Report available in English – click here to download: [ENGLISH]

Annual report 2023

The report summarizing the Foundation's activities in 2023. We continued our humanitarian activities for Ukrainian patients with rare diseases. The “Brave RARE Ukraine” project, documenting the stories of Ukrainian patients who fled to Poland before the war, has been launched. The PatientAdvocacy.Academy course was successfully held for the sixth time! We also had the pleasure of participating in numerous valuable events, conferences, and meetings.

Report available in English – click here to download: [ENGLISH].

2 Years of Commitment. Report on humanitarian aid for Ukrainian rare disease patients 2022-2023

The report summarizes two years of humanitarian assistance provided to Ukrainian patients with rare diseases. We outline the activities undertaken for refugees in Poland and other European countries, along with the support extended to the medical community and patients who remain in Ukraine. Detailed information, statistics, photos, and patient stories are presented within.

Report available in English, Polish and Ukrainian – click here to download: [ENGLISH], [POLISH], [UKRAINIAN].

PatientAdvocacy.Academy 2023: Strong organization, powerful advocacy

The report summarizing the 6th edition of PatientAdvocacy.Academy – a three-week online course for leaders of patient organizations. During the PAA 2023, we focused on strategies to strengthen patient organizations and make patient advocacy activities more effective and visible. Thanks to case studies and practical examples, participants could immediately apply many solutions in their patient organizations. We’re proud that the participants once again rated PatientAdvocacy.Academy very highly.

Report available in English – click here to download: [ENGLISH]

1 Year of Cooperation. Report on humanitarian aid for Ukrainian rare disease patients (2023)

The report on our humanitarian activities for Ukrainian patients with rare diseases, in which we describe our main areas of activity: helping patients fleeing the war in Ukraine, on-site support for Ukrainian patients and the medical community, information and legal support for patients and raising awareness about their situation. You can also find many details, photos, statistics and patient stories.

Report available in English, Polish and Ukrainian – click here to download: [ENGLISH], [POLISH], [UKRAINIAN].

Annual report 2022

The report summarizes our activities in 2022. It was a year in which we focused primarily on humanitarian aid for patients with rare diseases from Ukraine. The fifth edition of PatientAdvocacy.Academy was held in September, and as every year, we were also active in the international arena, taking part in conferences and industry meetings. And we celebrated the Foundation's fifth anniversary!

Report available in English – click here to download: [ENGLISH].

PatientAdvocacy.Academy 2022: Global Challenges. 5th edition

The report summarizing the 5th edition of PatientAdvocacy.Academy – a three-week online course for leaders of patient organizations. During the PAA 2022, we took up all relevant topics from the PAG perspective in the context of Global Challenges, such as access to treatment, online education and plasma awareness. We gave participants resources to make their actions even more effective, more spectacular and more visible, and the participants once again rated PatientAdvocacy.Academy very highly.

Report available in English – click here to download: [ENGLISH]

Summary report 2017-2021

The report summarizes the first five years of the foundation's activity. Year after year, we present the most important projects that we have implemented and events in which we participated. You can read about the activities we are most proud of: four editions of PatientAdvocacy.Academy (2018-2021), trainings for physicians and nurses (2018, 2019), a medical handbook for patients with PID (2021), testimonials of patients with Fabry disease (2021) or a report about plasma donation and PDMPs in Poland (2021). 

Report available in English - click here to download: [ENGLISH]

Educational materials for patients

Brochures for Ukrainian rare disease patients in Poland (2022-2023)

We prepared four educational brochures for Ukrainian rare disease patients in Poland. The first one presents medical care system in Poland from the perspective of rare disease patients. The second is a Ukrainian-Polish medical dictionary for patients with primary immunodeficiencies, containing over a hundred of the most important medical terms related to PID. The third brochure is about social benefits for rare disease patients or their caregivers who are refugees in Poland. The last one is devoted to immunoglobulin therapy for patients with primary immunodeficiencies in Poland.

Brochures are available in Ukrainian – click here to download: [BROCHURE_1], [BROCHURE_2], [BROCHURE_3], [BROCHURE_4].