PatientAdvocacy.Academy
Join us and make your organization work even more effectively,
for the benefit of all patients!
New information about our upcoming edition will be available soon!
Use your potential and learn new skills
PatientAdvocacy.Academy is a well-designed course for patient advocates who want to be better, more effective and up to date in their work! It consists of many different activities with one goal: to be a better patient advocate.
21-day programme
full of variuos activities
10 online lectures
about strong organization
and powerful advocacy
2 coaching circles
to work on your goals
Exclusive discussion group
to share expierience
Grant competition
with a prize pool
What exactly PatientAdvocacy.Academy is?
PatientAdvocacy.Academy is an online video training dedicated for Leaders of patient organizations who are actively working to improve the situation of patients in their countries, especially from advocacy groups in the area of rare diseases. We want to give them resources to make their actions even more effective, more spectacular and more visible. Their attendance in the course is completely free of charge thanks to the support of our sponsors.
Previous editions of PatientAdvocacy.Academy
PatientAdvocacy.Academy is our flagship educational project, which we launched in 2018.
Every edition of the course has provided impressive numbers and measurable results.
awarded grants
participants
118
12 750 €
50
organizations
6
editions
The next edition of the course will start in:
We start our Academy by meeting each qualified participant for an one-hour session. It allows us to get to know each person better, increase their commitment, and build understanding between us. During the call, we learn more about the situation of patients with a given disease in a specific country and the challenges faced by the patient organization.
After completing individual meetings with participants, we start a 21-day program containing various activities. This is a solution that we have developed together with participants over the last six 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 are dedicated to introducing the topic and getting to know each other better on the exclusive discussion group.
Then, for 2 weeks, every work day we provide video lectures in English, each approximately 20 minutes long (10 total) covering the most important issues related to the topic of a given edition of the course, supported by daily discussions on group and team-work during live sessions. We 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 also consist of many additional screens, charts and infographics to make learning easier and more enjoyable.
How does PatientAdvocacy.Academy looks like?
Additional educational materials are prepared for each video lesson, which allows participants to consolidate their knowledge and immediately translate it into practical solutions for their 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 year 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 are available for participants on a dedicated e-platform for 1 year after the course.
Online video course is an easily accessible and proven way of learning. Participants can watch the videos anytime – after work or school or during commuting by public transport.
We can learn together despite the fact that we will be physically separated by hundreds of kilometres!
Why an online course?
Each PatientAdvocacy.Academy – apart from learning – is also an opportunity to gain funds for the activities of the patient organization. There are usually three grants worth around 1000 € each. The aim is to raise the engagement rate and support valuable projects of the participating organizations. We assess both the activity of the participant (watching the videos, taking part in the discussions and calls) and the competition task.
We always assess the answers and the activity using a standardized internal procedure. The records are written and available for the participants on request to maintain transparency.
We always conduct a due dilligence process before signing the donation agreement. The usage of the grant is restricted to the statutory goals of the organization, and we have a right to audit the expenses if there are any doubts.
What do the tasks look like? For example, in the previous editions participants needed to:
Grant competition
Meet your trainers
A former long-standing leader of a nationwide patient organization and a member of the executive board of a international umbrella organization, Goretzki received the Luciano Vassali Award in 2014, the University of Silesia Rector’s Award in 2020, the Global Genes RARE Champion of Hope in 2022, and the EURORDIS Black Pearl Award in 2023 for his successful patient advocacy. A professional lawyer, advisor, and speaker, he currently serves as the president of the foundation.
Adrian Goretzki
A psychologist with experience in working with patients with rare diseases, she has been active in this field since 2014. At the foundation, she is responsible for the scientific aspect of the foundations’ work, with a focus on coordinating studies, reports, and researching the area of quality of life. She is also a co-author of two handbooks for patients and a successful TEDx speaker, with over 400k views on YouTube.
Bernadeta Prandzioch-Goretzki
A lawyer by profession, with experience in HTA and patient advocacy, she is responsible for legal research projects at the foundation. These projects are related to medicine reimbursement, access to treatment, and patients' rights. She also conducts research on policies concerning the participation of patient representatives in decision-making processes across Europe.
Kamila Rzepka
Recommendations
Learn participants' opinion about the Academy!
I want to thank the organizers of this awesome online training and the instructors for their intellectual teachings. I was so elated from the beginning to the end of the training. I hope to participate next time in an online training like this. I learned a lot from it. (…)
Elmedina Kukaj
Kosovo Hemophilia Foundation
“
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Megan Kendall
Alpha-1 Awareness UK
This course has been really helpful for me. Not only has it allowed me to learn more about patient advocacy but it has also allowed me to explore ideas. These ideas are now more solid and could actually be done and that is thanks to this course.
This was by far the best training I’ve ever received. It was packed with practical and useful information based on the personal advocating experiences of the Patient Advocacy Academy Team. (…) Really a great training course!
Uroš Brezavšček
Slovenian Association for Patients With Bleeding Disorders “Krvni Bratje”
“
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Despite taking place online, Patient Advocacy Academy was very educational and interactive for me. I’ve learned many new things about advocating and ways of expanding my home patient organization’s activities through different projects.
Vida Ramšak Marčeta
Slovenian Association for Children with immune disorders
Choice of the
subject: 9,3
General
evaluation: 9,3
Usefulness of
the information: 9,4
The participants of all the previous editions assessed PatientAdvocacy.Academy very high!
The next edition of the course will start in:
Stay tuned for PatientAdvocacy.Academy 2024!
Coming back soon with more updates!
Sponsors of previous editions:
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Contact: office@eduinstitute.org
