11:30 – 13:00

Session Leads

Dr. Helen Parfrey

Consultant Respiratory Physician and trustee for Action for Pulmonary Fibrosis

Pippa Powell

European Lung Foundation (ELF) Director

Liam Galvin

EU-IPFF Secretary

Lessons learned from other chronic diseases patient groups

The aim of this session is to share learning from other chronic disease patient groups from Europe, as learning from the experience of others is invaluable. There can be numerous barriers to overcome in order to establish a patient group.  In addition, ensuring sustainability, growth and development of the patient group are critical for its success. Being a member of a group provides emotional support, a forum for sharing experiences and patient empowerment. Patient groups can also help to drive change and better practice. Having a better understanding of these challenges and benefits will assist patients and healthcare professionals who are considering setting up or already involved within a patient group.

Key Topics

  • The barriers and benefits of patient groups – identifying patient needs and requirements to set up a patient group.
  • Insights into what makes a successful patient group – the pearls and pitfalls, how to ensure sustainability, resources and funding, using digital technologies and social media. 
  • The power of the patient voice – working with partners to raise awareness, educate and change policy environment.

Session Format

There will be three individual presentations followed by a panel discussion.


Announced Soon

 Please note that the programme is still updated on a regular basis until finalised.