On Saturday the 4th of May 2024, a number of pulmonary hypertension patients and their relatives, friends and carers, from Switzerland and Germany joined the French group to celebrate World Pulmonary Hypertension Day together, as has been their custom since 2016. At the initiative of HTaPFrance, the French pulmonary hypertension association, the gathering was held at the “Écomusée d‘Alsace” in Alsace (France). §
The longest-serving volunteers from the associations paid particular tribute to the memory of Bruno Kopp, who in 2003 was the driving force behind the merger of the European pulmonary hypertension patient associations. Conversations also focused on the progress made in recent years, both in research and in the development of new treatments and transplant. The discussions also showed that despite common guidelines, there are still differences between countries in the way patients are cared for.
Hans-Dieter Kulla, President of PHEV: «Thank you very much for the wonderful event. Everyone enjoyed themselves and the community of the three countries was revitalised. I am already looking forward to the next meeting».
Our comment: When associations from different countries come together, as is the case for the May 4 meeting, they have the opportunity to share knowledge, experiences, and resources that can significantly benefit all patients. Additionally, such meetings foster a sense of solidarity among patients, empowering them to navigate their healthcare journeys with greater resilience and optimism. A great initiative!
§ The Écomusée d’Alsace is an open air museum, it is set out like an Alsatian village of the early 20th century. As part of the Musées de France network, it offers an outstanding collection of around 80 buildings and everyday artefacts, and plays an active role in transmitting knowledge and experience of traditional crafts. The museum is a local driving force for conserving the environment. Watch the museums’ official promo video at this link
