Special edition of the course – dedicated to Global Challanges – has been designed in response to the most urgent challenges faced by patient advocates in Europe. It will take place on 8-28 September 2022.
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.
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.
Higly effective patient advocates – even in the face of challenges
We want to give participants resources to make their actions even more effective, more spectacular and more visible. Thanks to the course they 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
- Find out how to improve comfort and take care of newly diagnosed patients
- Get to know how can we support Ukrainian patients in a long-term perspective
- Learn how to prepare interesting meetings and conferences for patients
- Get to know how to start preparing valuable podcasts and video materials
If you want to learn more about PatientAdvocacy.Academy 2022 or you want to participate in the Academy, please visit: patientadvocacy.academy