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

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)

We prepared three 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 with pronunciation for patients with primary immunodeficiencies. It contains over a hundred of the most important medical terms related to PID and often used in a doctor's office or medical records. The third brochure is about social benefits for rare disease patients or their caregivers who are refugees in Poland.

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