Accelerating EU research for rare diseases – the case of pulmonary hypertension

Accelerating EU research for rare diseases – the case of pulmonary hypertension

Pulmonary hypertension (PH) is a rare condition that affects about 15 to 50 people out of every million. Although it cannot be cured, in the past decade great improvements have been made in the understanding of PH, but there remain many opportunities for further research in this area.

Ahead of World PH Day (5 May annually), the MEP Lung Health Group hosted the free webinar, “Accelerating EU research for rare diseases – the case of pulmonary hypertension” on 21 April, 2021.

The webinar features presentations that showcase how EU research has led to successes in the field of PH. The presentations are followed by a virtual roundtable discussion, wherein expert panellists discuss how to further accelerate EU research on rare diseases, to strive for more breakthroughs in this area. The participants included:

Hosts:
  • MEP Maria da Graça Carvalho (EPP, Portugal)
  • MEP István Ujhelyi (S&D, Hungary)
Moderator:
  • Carlos Robalo Cordeiro, ERS Vice President
Speakers:
  • Marc Humbert, ERS President Elect
  • Christina Kyriakopoulou, Team Leader for Rare Diseases and Biotools, DG Research
  • Maleen Fischer, patient, PHA Europe
  • Marion Delcroix, Chair of ERS Assembly 13 (Pulmonary vascular diseases)
  • Gabor Kovacs, ERS clinical research collaboration PEX-NET
Advocacy panel discussion
EU Affairs
Past advocacy event
Public health
Pulmonary vascular diseases