STYPA 2019 - Shaping the Future of Patient Advocacy

What is it?

The Summer Training Course for Young Patients Advocates – Leadership Programme is an exciting and unique opportunity offering a tailored high-quality training to young patient advocates or representatives, who have the motivation to learn more about advocacy and maximise their leadership potentials in a real environment. Our vision for the Summer Training Course is to create a platform where young patient advocates would empower, inspire, and learn from each other on an annual basis.

What was the topic?

This edition of STYPA was dedicated to investigating how patient advocacy wasevolving and facing emerging challenges and opportunities while keeping a strong ethical approach. Young patients’ voices are increasingly heard by regulatory bodies such as EMA, industry, HTA bodies, and policy makers, to ensure that their perspective is not missed to inform the decision-making process. As usual, these opportunities raise questions around the representativeness of those bringing the patient perspective, their potential conflict of interest or risk of bias depending on the role patient advocates play in which context. Through the Training Course, EPF raised awareness among the new generation of young patient advocates on current challenges, obstacles, opportunities, and shared good practises for ethical patient advocacy in complex environments.

Where and when?

The Training Course was held in Vienna, Austria from Sunday 7th July through Wednesday 10th July 2019

Travel and accommodation were covered by EPF.

Who were the participants?

All employees were:

  • Young employees or volunteers of a patient organisation,
  • Young patients with a chronic and/or lifelong illness/condition who were affiliated with a patient organisation,
  • Young patients with a chronic and/or lifelong illness/condition who were not affiliated with a patient organisation,
  • Alternatively, a family member/carer of a young patient with a chronic and/or lifelong illness/condition could attend the training if he/she accompanied a young advocate and was at the same time an active patient advocate.
  • 18 - 30 years of age
  • Country of residence: Applications will be accepted from candidates living in the EU Members States and those countries who have either the official EU candidate or potential candidate country status.

Participants from the previous edition of STYPA were also welcomed to apply for this edition.

Related Information

Find the full agenda of STYPA 2019 here.

Read the full advocacy code of conduct drafted by some of the participants.