Take part in an online video course for young patient advocates!

This is the sixth edition of PatientAdvocacy.Academy, and the pool of important topics that should be addressed to make running patient organizations easier, and to make the fight for patients' rights more effective, is still not exhausted.

Both those who are at the beginning of their adventure with managing a patient organization, as well as "veterans" who have been involved in its activities for many years, want it to be "strong". Because a strong organization means more patients saved, better treatment and fuller, more normal lives for people with rare diseases. In order to build such an organization, you need to be aware of what elements are necessary and with what tools to combine them.

And the most important task of every patient organization (and at the same time the most difficult) is the fight for patients' rights, including access to treatment. But how can it be done efficiently and effectively? How can we become experts in powerful advocacy?

In this edition of PatientAdvocacy.Academy, we want to teach you how to build a strong and credible organization with a well-planned budget and effective fundraising, which has dedicated and committed volunteers.

Again, we have decided to design a 21-day program containing various activities. This is a solution that we have developed together with participants over the last five years and which brings the most benefits, while enabling participation in a way that is easy to reconcile with their daily duties and professional work.

The first days of the course will be dedicated to introducing the topic and getting to know each other better on the Slack chat group.

Then, for 2 weeks, every work day we will provide online videos (10 total) covering the most important topics, supported by daily discussions on Slack and team-work during live sessions. We will also take care of English subtitles so that each participant can understand the content, even if he or she is not fluent in English. Each video will also consist of many additional screens, charts and infographics to make learning easier and more enjoyable.

Additional educational materials will be prepared for each video lesson, which allows you to consolidate your knowledge and immediately translate it into practical solutions for your patient organizations.

In previous editions, thanks to online video conferences, we created a significant sense of unity across the participants, who learned from each other, motivated themselves and provided others with valuable feedback. In this edition, we also plan to conduct 2 online videoconferences – coaching circles – during which participants will exchange views and experiences on the proposed topics in order to find solutions to their own obstacles.

All the videos will be available for you on a dedicated e-platform for 6 months after the course.

From 2010 to 2018, served as leader of the Polish Association for Patients with Primary Immunodeficiencies 'Immunoprotect’ and was a member of the executive board of the international umbrella association, the International Patient Organization for Primary Immunodeficiencies (IPOPI). For his successful patient advocacy, Goretzki was given the Luciano Vassali Award in 2014, the University of Silesia Rector’s Award in 2020, RARE Champion of Hope in 2022 and the EURORDIS Black Pearl Award in 2023. Professional lawyer, advisor, and speaker. Fascinated with opportunities given by new technologies in the field of education.

Business psychologist with vast amount of experience in designing and developing online courses. Successful TEDx speaker (over 400k views), author of many scientific publications on international conferences and articles popularizing psychological knowledge. Co-author of a handbook for PID patients – “Fullness of life”. Using professional skills and experience for the past few years engaged in a voluntary work with people with rare diseases. In the Healthcare Education Institute she is responsible for the scientific part of our job, focusing herself on coordinating studies and reports.

A lawyer by profession, in recent years she has worked in criminal justice body, where she also dealt with medical malpractice cases. She gained experience in working with groups of patients primarily as a project manager in the Polish Association for Patients with Primary Immunodeficiencies 'Immunoprotect' in 2014-2017. At the Healthcare Education Institute, she is responsible for coordinating ongoing projects and cooperation with patient organizations, mainly in matters related to reimbursement, access to treatment and the fight for patients' rights.

Day 1-4

Day 5-9

Day 7

Day 12-16

Day 14

Day 16

Day 21