Join us and make your organization work even more effectively, for the benefit of all patients!
Stay tuned for the next edition!
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 various activities
10 Online Lectures
about strong organization
and powerful advocacy
2 Coaching Circles
to work on your goals during live sessions
Exclusive Facebook Group
to exchange ideas with fellow patient advocates
Grant Competition
featuring an attractive prize pool for your organization
PatientAdvocacy.Academy is an online video training program designed for individuals like you: leaders of patient organizations who are actively working to improve patient welfare in their countries, with a special focus on advocacy groups in the field of rare diseases.
Our goal is to provide you with resources that will help you plan your organization's activities more effectively, execute projects more efficiently, and ultimately drive your mission forward.
Attendance in the course is completely free of charge, thanks to the support of our sponsors. Join us and elevate your advocacy efforts to the next level. Sign up now and start making a difference!
50
countries
13
rare diseases
86
organizations
170
participants
continents
5
Before we dive into the main course, you’ll take part in a one-time online session in a small, welcoming group of fellow participants (max. 10 people). During this session, you’ll get the chance to meet your trainers, form early connections, and share your story. These meetings also help us better understand your context – the healthcare environment in your country and the specific challenges you face. This insight allows us to tailor the Online Discussion Circles to make them truly relevant and practical.
Pre-Course Welcome Meetings
The first four days of the PatientAdvocacy.Academy are dedicated to fostering connections among participants. We create a private discussion group where you can introduce yourself, share more about your organizations, and talk about the condition you advocate for. This phase also covers technical steps like completing a pre-course survey, accessing the video platform, and getting ready to dive in!
Community Building
For the next 2 weeks, you'll have expert video lectures every workday, totaling 10 sessions. These cover the most important topics (you can find the detailed list in the next section). Each video includes English subtitles, so you can understand the content even if English isn't your first language. We've also added extra screens, charts, and infographics to make learning easier and more enjoyable for you. To ensure you can easily understand the content, even if you have very limited knowledge of English, we provide AI-created, human-verified translations of the videos (with lip sync).
10 Expert Video Lectures
Every lecture is accompanied by additional learning materials to help deepen your understanding and apply it to real-life challenges faced by your patient organization. Under the videos, you’ll find:
Educational Materials
a printable exercise in PDF format,
a short quiz with 4 questions,
a summary of the lecture.
Twice during the PatientAdvocacy.Academy, we host live online discussion circles. These are interactive sessions where you will have the chance to collaborate with other participants to develop answers to real-world challenges. These discussions are a great opportunity to exchange ideas and share solutions that you can implement within your organization. The topics for these sessions are selected based on insights gathered from welcome meetings.
Online Discussion Circles
A core principle of the Academy is that participants learn not only from trainers but also from each other. The discussion group (a private Facebook group) provides a space where you can exchange ideas, share success stories, and build meaningful connections for the future. It is also a place to ask follow-up questions related to the lecture content.
Communication on a discussion group
It breaks down geographical barriers – you can learn with us regardless of your location. Even if we’re separated by hundreds of kilometers, that won’t hold you back.
It offers flexibility in terms of when and where you can learn – you have access to training materials at a time that suits you and fitting your learning around work, family, and other responsibilities.
It is more cost-effective than in-person courses – you save on accommodation and transport costs.
It allows you to learn at your own pace – you adjust your learning pace depending on whether you need more time to understand difficult concepts or want to progress faster in material you find easier.
PatientAdvocacy.Academy isn't just about learning – it's also an opportunity to raise funds for your patient organization's activities. This means you can immediately put your new ideas into practice! In this edition, the prize pool is €5,000.
How can you get it? It's simple!
1. Actively participate in the Academy:
watch videos, join discussions, and attend coaching circles.
2. Prepare your competition entry:
follow the topic and competition guidelines provided at the end of the Academy.
We will select 5 winners who will receive grants for their patient organizations' activities!
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 rare disease patients, 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. Author of many scientific publications and articles popularizing psychological knowledge. 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
Anna Szychulska
In recent years, she has worked as an art educator, taking part in numerous humanitarian projects. Her experience includes working with various vulnerable groups, such as asylum seekers (in Bosnia and Herzegovina), hospitalized children (in Armenia), and individuals with disabilities (in Poland). This practice has always been rooted in international cooperation and focused on creating social impact. At the Institute, she is responsible for managing ongoing projects.
I just want to thank and congratulate (...) for another amazing workshop! The videos were more than interesting, and also most relevant (and practical). I truly enjoyed it!
Stefan Radovanović
European Heamophilia Consortium
Kornelije Juranić
Hrvatska Anderson Fabry udruga
This was my second year in the academy. And I have the intention to continue applying for the academy, because the topics dealt in the academy are different every year. The videos are of great quality, and they are easy to follow.
Oana Voivod
“The Together for Patrick Association” - PO representing patients with cystic fibrosis from Romania
The video materials were extremely helpful and practical and I learned a lot from them. I also really appreciated how active and engaging the Facebook page was; I read many interesting comments and found some valuable insights there as well.
(...) I really enjoyed the interaction with fellow participants in the Facebook group; it was inspiring and motivating to connect with others. I would be more than happy to join a future edition of the Patient Advocacy Academy, as the experience has been truly special.
Maria Beekman-Kortekaas
HAE the Netherlands
9,5
General evaluation
of all editions
9,7
Usefulness
of the information
9,7
Choice
of the subject
MULTIDIMENSIONAL, ENGAGING EXPERIENCE. This is more than an online course - it’s a complete training tool with continuous expert support to build your knowledge and skills.
GLOBAL PERSPECTIVE. We teach proven tools and solutions used by patient organizations worldwide.
PRACTICE FIRST. Topics are explored through real-life case studies and practical strategies.
PROGRAM TAILORED TO EXPECTATIONS. The course directly addresses your needs and challenges.
COMMUNITY-DRIVEN APPROACH. You connect, share experiences, and grow together.
CONVENIENT LEARNING FORMAT. You can learn from anywhere, you just need 30 minutes a day for 21 days.
If you would like to be informed about the details of the new edition of PAA and its start date, fill out the form below, and we will contact you!
Sponsors and Donors of previous editions:
Partner:
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