PatientAdvocacy.Academy 2021

Public policy advocacy – real challenge for Young Leaders

PatientAdvocacy.Academy 2021 was addressed to Young 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 was Public Policy Advocacy the main topic?

Public policy advocacy is one of the most demanding and complex areas of activity of patient organizations. It was also clearly visible in results of our surveys from previous editions of the Academy. Fields of activity related to policy advocacy were indicated as the most tough ones.

Patient advocates are usually aware of the need for changes in healthcare policy, but also do not have any experience or knowledge in this area. Meanwhile, in the current situation, caused by the COVID-19 pandemic and potentially insufficient amounts of plasma on the market, it is even more important for patient advocates to be able to effectively fight for the rights of patients in their countries, including ensuring access to treatment, its safety and reimbursement.

Well-educated Young Leaders

Our main goal was to equip Young Leaders with essential knowledge about public policy advocacy and practical skills needed to effectively fight for patients rights, access to treatment, reimbursement and so on.

The course provided the participants with the opportunity to:

  • Gain knowledge how the European healthcare systems works
  • Learn how to collect and use crucial data on patients and the healthcare system
  • Strengthen position of their PAG by establishing and keeping relations with people responsible for healthcare policy
  • Learn how conduct a public policy campaign step by step
  • Gain knowledge on the health technology assessment (HTA) as well as pricing and reimbursement processes
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”
“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