PatientAdvocacy.Academy:

Global Challenges

Special edition of the course designed in response to the most urgent challenges faced by patient advocates in Europe

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08.09.2022 – 28.09.2022

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 global challenges

3 coaching circles to work on possible solutions

Exclusive Slack group to share expieriences

Grant competition with 2,400€ prize pool

Last seats available! Submission closes in:

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Join the PatientAdvocacy.Academy and gain new knowledge!

Thanks to the course you will:

Gain knowledge about the long-term impact of a COVID-19 pandemic on patients

Find out if the safety of PID patients is at risk due to the decline in vaccinations

Receive knowledge about plasma donations and PDMPs

Gain knowledge how to effectively fight for an access to treatment

Get to know how can we support Ukrainian patients in a long-term perspective

Find out how to improve comfort and take care of newly diagnosed patients

Learn how to prepare interesting meetings and conferences for patients

Get to know how to start preparing valuable podcasts and video materials

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 plasma-derived products. 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

31

ORGANIZATIONS

4

EDITIONS

9 350 €

AWARDED GRANTS

74

PARTICIPANTS

Why Global Challenges are the main topic?

Recent years, months or even weeks have brought patient advocates – especially those operating in the area of plasma-derived products – many challenges.




First, we experienced the COVID-19 pandemic which strongly affected the healthcare systems in different countries, access to treatment and appropriate diagnostics, as well as the approach to patients with rare diseases.




Also, drops in plasma donation caused by a pandemic resulted in shortages of drugs for patients who are fully dependent on them.


In some countries there are already temporary drug availability problems, in others the pandemic has become an excuse to cut back on spending on rare disease patients.




Moreover, in February, Ukraine was attacked by Russia and the war began - the first such large armed conflict since the Second World War. The war had an obvious impact on Ukrainian rare disease patients, but also on healthcare systems across Europe.


It is high time to take a look at these challenges and start discussing them in order to think about what actions we may take in the field of patient advocacy and patient education.


Therefore, during PatientAdvocacy.Academy 2022, we want to take up all relevant topics from the PAG perspective in the context of Global Challenges, such as an access to treatment, vaccinations, online education and plasma awareness. We want to initiate the exchange of experiences and develop solutions that will help to effectively meet the needs of patients in the near future.

Again we decided to design a 21-day programme containing various activities. First days would be dedicated to introducing the topic and getting to know each other better on Slack group.


Then we provide 10 video lectures covering most important topics, supported by everyday discussions on Slack, and team work during live sessions.


In the first 5 videos, we will focus on the challenges faced by patient advocates, and in the next ones - on possible solutions.


There would be 3 online video conferences – coaching circles – where participants would exchange their view and experiences on the proposed topics in order to find solutions of 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 2022 looks like?

Topics of the lectures

WEEK 1 – CHALLENGES

Video 1

COVID-19 pandemic and its long-term impact on RD patients and patient community.

Monitoring access to treatment and the quality of medical care.

Is the safety of PID patients at risk due to the decline in vaccinations?

Plasma donations and plasma derived medicines – global shortages and PDMPs access issues.

War in Ukraine – impact on patients, patient communities and healthcare systems.

Video 2

Video 3

Video 4

Video 5

WEEK 2 – SOLUTIONS

Video 6

How to effectively fight for an access to treatment during a global crisis? – case studies.

New trends in education – how to use it in patient organization?

Videos and podcasts as an essential element of patient education – practical tips.

Plasma awareness – what PAGs can do to improve the situation?

Ukrainian patients – how can we support them in a long-term perspective?

Video 7

Video 8

Video 9

Video 10

Timetable

Day 1-4

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 lectures

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

First Round of Online Circles

Exchanging views and experiences on the proposed topic regarding patient education during COVID-19 pandemic in order to find solutions and plan possible activities.

Day 6

Day 9

Second Round of Online Circles

Exchanging views and experiences on the proposed topic regarding access to treatment during COVID-19 pandemic in order to find solutions and plan possible activities.

Day 12-16

Providing lectures

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

Day 14

Third Round of Online Circles

Exchanging views and experiences on the proposed topic regarding plasma awareness in order to find solutions and plan possible activities.

Day 16

Grand Competitions

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. In times of the COVID-19 pandemic an online video course is the safest and most effective form of learning!

Why an online course?

Grant competition

Win up to 1000 € for your patient organization in just two steps!

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! In this edition of PatientAdvocacy.Academy, the prize pool is 2 400 €.

How to get them? You need to fulfill two conditions - it's easy!

  • Actively participate in the Academy – watch videos, participate in discussions, be present at coaching circles
  • Prepare the competition entry in accordance with the topic and guidelines that will be given at the end of the Academy

We will select 3 winners who will receive grants for the activities of their patient organization!

Meet your trainers

In years 2010-2018 leader of Polish Association for Patients with Primary Immunodeficiencies 'Immunoprotect', former member of IPOPI executive board. For his successful patient advocacy Adrian has been given Luciano Vassali Award in 2014, University of Silesia Rector’s Award in 2020 and was shortlisted for the EURORDIS Patient Advocacy Award in 2021. Professional trainer, advisor and speaker. Fascinated with opportunities given by the new technologies in the field of education. He introduces video tutorials, online courses, webinars and video streaming to the areas of patient engagement and education.

Adrian Goretzki

Business psychologist with vast amount of experience in designing and developing online courses. Successful TEDx speaker (over 350k 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

Recommendations

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

I love your work! I especially love the practical lectures and the concrete suggestions that you provide during your sessions. Thank you again for providing a patient community with much-needed knowledge and for sharing your valuable experience.

Stefan Radovanović

European Hemophilia Consortium

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 ever received. It was packed with practical and useful information based on the personal advocating experiences of Patient AdvocacyAcademy team. (…) Really a great training!

Uroš Brezavšček

Slovenian Association for Patients With Bleeding Disorders “Krvni Bratje”

Participation in PatientAdvocacy.Academy made it easier for me to manage the Association (...). Overall, my impression is very positive because of the organization, subject and content. I would love to repeat it again!

Ewa Kapuścińska

Polish Association for Patients with Primary Immunodeficiencies “Immunoprotect”

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

General

evaluation: 9,1

Usefulness of

the information: 9,3

Choice of the

subject: 9,2

Last seats available! Submission closes in:

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Join PatientAdvocacy.Academy now!

After registration you will receive a confirmation email and we will arrange a short video call (10 minutes) with you.

Sponsors:

Copyright by Healthcare Education Institute. The Foundation 2022.


Contact: office@eduinstitute.org

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