Annual reports

Here you can find information about our work throughout the past years. 

 

Annual report 2024

The report presenting the Foundation's activities in 2024. We conducted research on the quality of life and treatment preferences of patients with Fabry disease in Poland. In the autumn, another edition of PatientAdvocacy.Academy took place. At the end of the year, we premiered the "Legal Toolkit for Patient Advocates", a report on patients’ participation in decision-making and law-making processes, which we had been working on for quite some time. We also continued our humanitarian efforts and our media project "Brave RARE Ukraine". Additionally, we had the pleasure of delivering several lectures and training sessions, as well as participating in numerous industry events.

Click on the cover to read the report.

 

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.

Click on the cover to read the report.

 

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!

Click on the cover to read the report.

 

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). 

Click on the cover to read the report.