15:15 – 16:45

Session Leads

Klaus Geissler

German Lungenribrose e.V. Representative

Involvement of rare disease patient representatives in medical congresses

Patients with a confirmed diagnosis of IPF are faced with an unknown and poor prognosis with the average survival time after diagnosis being 3-5 years (without treatment). There are no curative therapies available. Two EMA-approved therapies are available to just slow down the disease progression. Patients are searching for practical, mental and emotional help in support groups and they ask for information on new developments and research findings. Well informed patient advocates are necessary to support patients and assist HCP‘s in their caring efforts. In this role as patient representatives, they need as much as possible actual information about all kind of new developments in the IPF space.

Key Topics

  • Patient Involvement in the ERS Congress  
  • Having patients as an essential part of a medical congress: Experience from the haematology community     
  • Experiences and Advantages with involving Patients in the PFF Summit

Session Format

Introduction keynote speech by Klaus Geissler followed by a succession of speakers. Each speaker will engage in an audience debate following his/her presentation. 


Klaus Geissler

German Lungenribrose e.V. Representative

Jan Geissler

Leukemia Patient Advocates Foundation Representative

More coming soon

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