MEP Lung Health Group event: Accelerating EU research for rare diseases – the case of pulmonary hypertension

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.”

Access the agenda and register for the event.

Catch up on the last MEP Lung Health Group event

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:

  • bringing awareness to the current state of the TB epidemic, both globally and within the EU
  • the challenges and opportunities for research and development in the field of TB in the context of the COVID-19 pandemic, and
  • the role that the EU is playing in addressing these challenges.

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:

  • Widespread support for EU-led Research and Investment programmes that cover TB, such as Horizon Europe, EU4Health, EDCTP 3 and IMI
  • A commitment to press governments and relevant multilateral agencies to promote and ensure global access to medicines, vaccines, medical equipment not just for COVID-19 but also for TB and other infectious diseases
  • Reaffirmation of their commitment to the targets agreed in the Political Declaration from the UN High-Level Meeting on TB, to strengthen international ties and work together in order to ensure a holistic, financed, sustainable and accountable response to TB
  • As a member of the G20, commit to enhance efforts and funding for TB research and development, and accelerate the scale-up of new shorter regimens of TB
  • Commit to sustained support for the Global Fund to fight AIDS, TB and Malaria, the largest multilateral provider of grants for health and a key player in mitigating the impact of COVID-19 on progress made against other infectious diseases and on fragile health systems

The event is available to watch on the ERS Respiratory Channel.