The next free MEP Lung Health Group event will focus on research for rare lung conditions and will be held online on 21 April 15:00–16:30 CET and is entitled “Accelerating EU research for rare diseases – the case of pulmonary hypertension”.
Pulmonary hypertension (PH) is a rare condition that affects about 15-50 people in every million. Although it cannot be cured, in the past decade great improvements have been made in the understanding of the condition. However, there remain many needs for further research in this area.
The webinar will feature presentations that showcase how EU research has led to successes in the field of PH. The presentations will be followed by a virtual roundtable discussion, where expert panelists will discuss how to further accelerate EU research on rare diseases, to strive for more breakthroughs in this area.
This event is jointly organised by the European Respiratory Society (ERS), PHA Europe and World Pulmonary Hypertension Day. It is endorsed by ELF, EURORDIS and ERN-Lung and Breathe Vision.
Participants include MEP Maria da Graça Carvalho (EPP, Portugal) and MEP István Ujhelyi (S&D, Hungary) as hosts.
Speakers will include Marc Humbert (ERS President Elect), Christina Kyriakopoulou (Team Leader for Rare Diseases and Biotools, DG Research (TBC)), Maleen Fischer (patient, PHA Europe), Gabor Kovacs (ERS clinical research collaboration PEX-NET) and Marion Delcroix (ERS Chair of ERS Assembly 13 (Pulmonary vascular diseases)).
Gergely Meszaros – Project Manager for PHA Europe stated “This webinar – which is part of the World PH Day events – is a unique and excellent opportunity for all the stakeholders to look back to the achievements on the field of PH and call for further progress on research.”
On World TB Day (24 March) the MEP Lung Health Group, in collaboration with the Global TB Caucus and TB Europe Coalition, organised an event on ‘Tuberculosis research and investment – lessons learned from the COVID-19 pandemic’, hosted by MEP Manuel Pizarro (S&D, Portugal, and co-chair of the MEP Lung Health Group).
The event was chaired by Dr Raquel Duarte, Secretary of ERS Assembly 10 (Respiratory infections), and was joined by an expert line-up of speakers. Presentations focused on:
One of the real highlights of the event were the talks from two patient advocates who called for more action to improve care for patients post-COVID, as many cases have been undiagnosed since the start of the pandemic. They also called for a strong investment in vaccines research for TB in light in the significant advance made is vaccines research and development with COVID-19.
The event had strong messages for MEPs including calls for:
The event is available to watch on the ERS Respiratory Channel.
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