PatientAdvocacy.Academy 2023:

Strong organization, powerful advocacy

Join us and make your organization work even more effectively,

for the benefit of all patients!

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SAVE THE DATE:

28.09.2023 – 18.10.2023

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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 Slack group

to share expierience

Grant competition

with a prize pool

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Last seats available! Submission closes in:

Days
Hours
Minutes
Seconds

Registration for this year's edition of the Academy has ended!

Stay tuned for information on next year's PatientAdvocacy.Academy 2024!

Join the PatientAdvocacy.Academy and gain new knowledge!

Thanks to the course you will:

learn why it is so important to build the credibility of your organization

and how to do it

gain knowledge on how to communicate the achievements

of their organization

learn how to plan the organization's budget, according to the possibilities and needs

find out what can and must be done and what cannot be done when raising funds

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learn how to write a letter to a minister or other important person that will be effective

find out how to use the legal possibilities in your country in the fight for patients' rights

gain knowledge how to effectively fight for

access to modern therapies

learn how POs can be involved at different stages of medicine introduction to the market

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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 you resources to make your actions even more effective, more spectacular and more visible. Your 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 means impressive numbers, measurable results.

awarded grants

participants

94

11 750 €

40

organizations

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5

editions

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Why "strong organization, powerful advocacy" is the main topic?

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.

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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 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.

How does PatientAdvocacy.Academy 2023 looks like?

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Topics of the lectures

WEEK 1 – Strong organization

Video 1

Video 2

Video 3

Video 4

Video 5

7 elements that build the credibility of your organization (and why you need credibility at all).

How to communicate your achievements (and why you should do it)?

The organization's budget – how to plan it step-by-step.

Fundraising dos and don'ts.

Finding volunteers and building their commitment.

WEEK 2 – Powerful advocacy

Video 6

Video 7

Video 8

Video 9

Video 10

How to communicate with the ministry of health (or other important body)?

The law is on your side. How can you use it in the fight for patients' rights?

How to fight for access to treatment or to improve the patients’ quality of life?

Involvement of the patient organization at various stages of the introduction of medicines to the market.

Learn and develop yourself to become an even better leader!

Timetable

Day 1-4

The beginning of the Academy & a warm-up on the Slack group

An opportunity to get to know each other before starting the Academy and exchange information on the situation in different countries.

Day 5-9

Providing video lectures

Online training with daily video lectures, exercises, quizzes and the discussions on the Slack group.

Day 7

First Online 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

Providing video lectures

Online training with daily video lectures, exercises, quizzes and the discussions on the Slack group.

Day 14

Second Online 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

Closing of the Academy

Grant competition results, closing of this year's Academy.

Online video course is an easily accessible and proven way of learning. You 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 raise funds for activities of your patient organization. Therefore you can immediately put your new ideas into practice! How to get them? You need to fulfill two conditions - it's easy!

The best projects with the most effective fight for patients' rights and most effective management of patient organizations

will be selected by us and awarded!

1. Actively participate in the Academy watch videos, participate in discussions, be present at coaching circles


2. Prepare the competition entry – in accordance with the topic and guidelines that will be given at the end of the Academy

Grant competition

Win funds for your patient organization in just two steps!

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Meet your trainers

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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Recommendations

Read opinions of our participants and see that it is also a great option for you!

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

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.

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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”

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

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Choice of the

subject: 9,2

General

evaluation: 9,2

Usefulness of

the information: 9,3

The participants of all the previous editions assessed PatientAdvocacy.Academy very high!

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Last seats available! Submission closes in:

Days
Hours
Minutes
Seconds

Registration for this year's edition of the Academy has ended!

Stay tuned for information on next year's PatientAdvocacy.Academy 2024!

Sponsors:

Copyright by Healthcare Education Institute. The Foundation 2023.


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Contact: office@eduinstitute.org

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