The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as PAGs, are made up of people who have an interest in a particular lung condition or topic related to lung health. Members share their views and get involved in projects to help improve treatment and healthcare. 13 Patient Advisory Groups have already been set up, covering lung conditions such as asthma, aspergillosis, lung cancer, COPD and pulmonary fibrosis.
A first meeting of the new Pulmonary Hypertension Patient Advisory Group was held on the the 10th of September 2023 context of the European Respiratory Society’s annual congress which took place in Milan Setepber 9-13. Various members of the European pulmonary hypertension community attended the meeting, including Eva Otter, President of PHA Europe, Zdenka Bradac, President of the Croatian Pulmonary Hypertension Association and Vice President of PHA Europe, Iain Armstrong, President of the UK Pulmonary Hypertension Association PHA UK, Oksana Kullish, President of the Ukrainian Pulmonary Hypertension Association, accompanied by Ulyana Malofiy, and Pisana Ferrari, President of AIPI, Italian Pulmonary Hypertension Association and Secretary General of the Alliance for Pulmonary Hypertension. Louise Bouman, President of the Dutch Pulmonary Hypertension Association and Mélanie Gallant Dewavrin, Director of the French Pulmonary Hypertension Association HTaPFrance are also members of the Pulmonary Hypertension Patient Advisory Group but could not attend the meeting.
The work of the European Lung Foundations’s Patient Advisory Groups over the past few years has been extremely important and useful. Initiatives conducted by the current PAGs include the production of factsheets in multiple languages, patient priorities websites, self-care guides, lay summaries of ERS guidelines, patient conferences and webinars, patient charters and surveys. Ee are delighted that a dedicated pulmonary hypertension PAG has been set up and look forward to working with the other members of the community on collaborative projects.