EPF Celebrates 20 years of Patient Advocacy!

May 15, 2023

Wow, what a day! 

On 28th April FH Europe attended the 20th anniversary event for EPF (The European Patient’s Forum). The day focused on EPF past, present and future, asking attendees challenging and thought provoking questions through a series of workshops around patient advocacy across policy and advocacy campaigns, building capacity in the patient community, plus shaping the stakeholder and research environment.

The workshops were interspersed with plenary sessions, the first being a panel-lead discussion sharing their views on the last 20 years of EPF – challenges, growth, and key learnings.

Other plenary sessions focused on the often lively debates in each parallel  workshop across the day (six in total), presented to attendees by a rapporteur from each group.

In the afternoon A ten-principle patient organisation manifesto was introduced and how it could have the potential of bringing stakeholders to the table. This is still in it’s draft format, and will be shared in due course.

FH Europe and Global Heart Hub teams meet in person. From left: Neil Johnson, Emma Print, David Kelly.

Key take-aways include:

  • The important role that EPF has played in terms of patient engagement, the pharmaceutical reform, the HTA Regulation and the European Health Data Space.
  • Digital health literacy is an involving and complex area, which can be disease specific and impact advocacy skills. It impacts all citizens as they one day may become patients, therefore should digital health be included in the early years of education.
  • The importance of EPF’s (and other organisations) youth groups. By involving them now, we can create consistency for the future.
  • Over two decades EPF has created a strong voice, and patient advocacy, ensuring that patients are heard and not just a ‘tick box’. In his opening speech, EPF President Marco Greco said “the shared journey of refusing to accept the status quo is what helps strengthen the patient community”
  • The importance of patient voices at all levels from research to clinical trials and beyond.
  • EPF is the glue between stakeholders; finding areas in which we agree and negotiate in areas we don’t.

“Collaboration is key. Together we are stronger”

— Marco Greco, President of EPF

Thank you to EPF for such an informative and organised day, and the perfect opportunity to meet fellow members.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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