PatientAdvocacy.Academy 2025:

Rare Leaders

Join us and make your organization work even more effectively,

for the benefit of all patients!

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Unlock your potential and gain new skills

PatientAdvocacy.Academy is a comprehensive course designed for patient advocates like you, aiming to enhance your effectiveness and stay up-to-date in your vital work. Our program includes a variety of activities all aimed at one goal: becoming a better patient advocate.


As part of the course, you will receive access to:

Click to play video

21-Day Programme

full of variuos

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

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Your journey to advocacy excellence starts here!

As we enter the seventh edition of PatientAdvocacy.Academy, we continue to address key topics that simplify managing patient organizations and amplify the fight for patients' rights.





Whether you're just starting your journey with a patient organization or are a seasoned advocate, the need for a "strong" organization is universal. A robust organization means saving more patients, ensuring better treatment, and enabling fuller, more normal lives for those with rare diseases. To build such an organization, it's crucial to understand the necessary elements and how to integrate them effectively.



The primary and often most challenging task of any patient organization is advocating for patients' rights, including access to treatment. How can this be done efficiently and effectively? How can we become experts in powerful advocacy?





In this edition of PatientAdvocacy.Academy, you will discover how to build a strong and credible organization with a well-planned budget and effective fundraising strategies, supported by dedicated and committed volunteers.

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You were promised to gain new knowledge and skills.

But what exactly does that entail?

In just 21 days you will:

understand the importance of organizational credibility and learn practical steps to establish it

gain skills in effectively communicating your organization's successes

learn how to plan a budget that aligns with your organization’s needs and capabilities

discover effective techniques and best practices for successful fundraising

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learn how to write persuasive letters to minister and other key stakeholders

understand the legal tools available in your country for advocating patients' rights

gain insights on how to advocate effectively for access to modern therapies

learn how POs can participate in various stages of introducing new medicines to the market

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Ok, but what exactly PatientAdvocacy.Academy is?

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 equip you with the resources to strengthen your organization and amplify your impact.


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!

Previous Editions of PatientAdvocacy.Academy

PatientAdvocacy.Academy, our flagship educational project, was launched in 2018.

Each edition of the course means impressive numbers, measurable results.

video lectures

participants

138

89

57

organizations

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35

countries

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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 private Facebook 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 Facebook group 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.

How does PatientAdvocacy.Academy 2025 look in detail?

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Video Lecture Plan

WEEK 1 – Strong organization

Video 1

Video 2

Video 3

Video 4

Video 5

Building trust: Key factors for credibility

The power of recognition: How to effectively share achievements

Comprehensive guide to budget planning

Mastering fundraising: What to do and avoid

Engaging volunteers: Recruitment and retention strategies

WEEK 2 – Powerful advocacy

Video 6

Video 7

Video 8

Video 9

Video 10

Writing impactful letters to key decision-makers

Fighting for rights: Using the law to your advantage

Strategies for securing treatment and enhancing quality of life

Patient groups and drug market entry: Roles and strategies

Continuous improvement: Becoming a stronger leader

Course Schedule

Day 1-3

Academy Kickoff & Facebook Group Warm-Up

An opportunity to introduce ourselves and share insights on various country-specific situations before diving into the Academy.

Day 5-9

Lectures

Engage in daily online training sessions featuring video lectures, exercises, quizzes, and group discussions on the Facebook platform.

Day 7

First Online Coaching Circle

Exchanging views and experiences on the proposed topic regarding a more effective fight for patients' rights and more effective management of a patient organization.

Day 12-16

Lectures

Engage in daily online training sessions featuring video lectures, exercises, quizzes, and group discussions on the Facebook platform.

Day 14

Second Online Coaching Circle

Exchanging views and experiences on the proposed topic regarding a more effective fight for patients' rights and more effective management of a patient organization.

Day 16

Grant Competition

Announcement of the competition tasks.

Day 21

Academy Conclusion

Wrap up the year's Academy with the announcement of the grant competition results and final remarks.

It breaks down geographical barriers – you can learn with us regardless of your location – whether we're separated by hundreds of kilometers, geographical barriers 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 traditional stationary 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.

Why we offer you an online course?

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 €3,000. How do you get it? It's simple!

We will select 3 winners who will receive grants for their patient organizations' activities!

1. Actively participate in the Academy: watch videos, join discussions, and attend coaching circles


2. Prepare your competition entry: follow the topic and guidelines provided at the end of the Academy

Grant competition

Still unsure about joining? What if we told you that you could secure funds for your patient organization in just two simple steps?

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Curious about who we are to claim that we can help you

build a strong organization and become an expert in powerful advocacy?

Let us introduce ourselves!

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.

Adrian Goretzki

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.

Bernadeta Prandzioch-Goretzki

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.

Kamila Rzepka

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But don't just take our word for it!

Check out what participants have to say:

First of all, it was a great experience and opportunity for me to be part of PAA 2023 again. The videos were so helpful for me as I'm working on my personal development for FR, especially for budget planning purposes and Volunteer Engagement. Once again, it was great to participate!

Elmedina Kukaj

Kosovo Hemophilia

Foundation

Oleksandr Radchenko

Ukrainian Alliance for Haemophilia and Related Disorders

I truly enjoyed the format of the Academy, as well as the engaging and informative content. (...) I was particularly impressed with the video lectures. They were exceptionally well-executed, with excellent audio, video quality, and a professional presentation of the material.

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This is I think my third Patient Advocacy Academy and I am coming back because I always learn something new and get new ideas for our advocacy campaigns.

Uroš Brezavšček

Krvni bratje, Slovenian association of patients with bleeding disorders

I just want to thank (…) 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

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Choice of the

subject: 9,3

General

evaluation: 9,2

Usefulness of

the information: 9,4

Participants from all previous editions have rated PatientAdvocacy.Academy very highly!

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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!

Do you have any questions?

We will be happy to answer them!

1. Who can participate in PatientAdvocacy.Academy?

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PatientAdvocacy.Academy is aimed at leaders of patient organizations, with a special focus on those advocating for patients with rare diseases.

2. How much does it cost to participate in PatientAdvocacy.Academy?

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PatientAdvocacy.Academy is completely free thanks to the support of our sponsors.

3. Can more than one person from a patient organization apply to participate in PatientAdvocacy.Academy?

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Yes, each application is considered individually, so we encourage all interested individuals to apply.

4. Can I participate in PAA if I'm just starting an organization or don't have much experience as a patient advocate?

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Yes, you can participate in the academy even if you are just starting an organization or don't have much experience as a patient advocate. Our course is designed to support both beginner leaders of patient organizations and those with some experience.

5. Are there any language requirements?

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PatientAdvocacy.Academy is conducted in English, and all video lectures include English subtitles. To actively participate in the course, you need to have at least a basic, communicative level of English.

6. How long does PatientAdvocacy.Academy last?

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The entire program lasts 21 days. You can find a detailed schedule in the "Course Schedule" section.

7. How can I apply to participate in PatientAdvocacy.Academy?

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Applications are done online. Simply fill out the form available on the website.

8. I have submitted my application for PatientAdvocacy.Academy. What happens next?

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After submitting your application, you will receive a confirmation email. In the next stage selected individuals will be invited to participate in a second recruitment stage, which involves a short 15-minute video call to get to know you and discuss your goals and challenges as a patient advocate.

9. Will I receive any additional information before the start of PatientAdvocacy.Academy?

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Yes. Three weeks before the start of PAA, you will receive emails with a detailed course plan, access to a closed Facebook group, and a request to complete a short, anonymous survey about your role as a leader of a patient organization.

10. What are the technical requirements to participate in PatientAdvocacy.Academy?

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To participate in the academy, you need a computer or mobile device with Internet access, a camera, and a microphone.

11. What if I can't watch a video lecture on a given day?

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Video lectures are published from Monday to Friday for 2 weeks. You can watch them at any time, although we encourage regular viewing to participate in discussions in the closed Facebook group. Active participation in PatientAdvocacy.Academy is one of the conditions for participating in the grant competition.

12. What if I can't participate in the online coaching circle?

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Online coaching circles will not be recorded or made available to participants. However, after the meeting, we will send a summary email so you can familiarize yourself with the main points discussed. Participation in online coaching circles is one of the conditions for participating in the grant competition.

13. Will I receive a certificate upon completion of PatientAdvocacy.Academy?

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Yes. After completing the academy, you can receive a certificate of participation.

14. Will training materials be available after the end of PatientAdvocacy.Academy?

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Yes, participants will have access to the training materials for one year after the course ends.

15. Can I withdraw from participating in PatientAdvocacy.Academy?

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Yes. If for any reason you cannot participate in the training, please inform us as soon as possible by email at kamila@eduinstitute.org.

16. How can I get more information about PatientAdvocacy.Academy?

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If you have additional questions, contact us by email at kamila@eduinstitute.org.

PS. Thanks to our fantastic sponsors and donors, your participation in the PatientAdvocacy.Academy 2025 is completely free!

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