Connecting and empowering the pulmonary hypertension community through newsletter exchange

As dedicated volunteers for our pulmonary hypertension patient associations, we understand the immense effort involved in crafting a newsletter. It goes beyond just creating content, which requires extensive research and writing, but also involves sourcing the right photos, designing an attractive layout, printing, and distribution. Newsletters serve as a fantastic way to stay connected with our communities and keep them informed about developments that matter to them.

Within these newsletters lie valuable articles relevant not only to our Members’ countries but also to the wider pulmonary hypertension community. However, it’s disheartening that all this incredible content, which represents countless hours of work and energy, often remains confined within individual countries and communities. As part of our mission at the PH-KSP, we aim to change this by fostering the exchange of knowledge and expertise.

We are delighted to share links to the latest monthly/quarterly newsletters from AfPH Members. In these newsletters, you’ll find a wealth of valuable articles.

Here is short selection:

  • An interview with Prof Sean Gaine, Consultant Respiratory Physician at Mater Misericordiae University Hospital in Dublin, Ireland, and Director of the National Pulmonary Hypertension Unit (Nefes, PAHSSc, Turkish pulmonary hypertension patient association)

  • Information about the proposal for an EU Disability Card (Nieuwsbrief, Pulmonale hypertensie vzw, Belgian Flemish pulmonary hypertension association)

  • Six Italian long-term lung transplant recipients reconnect and celebrate at countryside retreat – AIPInews, AIPI, Italian Pulmonary Hypertension Association

  • Interview with Prof Harm Jan Bogaard, pulmonologist at the Amsterdam UMC, The Netherlands, about hereditary pulmonary arterial hypertension – Papillon, Stichting Pulmonale Hypertensie, Dutch PH patient association)

  • Lecture by Masaro Hatano PhD, Association Professor, Faculty of Medicine, Tokyo University, and other speakers, at the 15th National Pulmonary Hypertension Congress of PHA Japan – PHA Japan Newsletter

  • Interview with Pisana Ferrari, President of AIPI, Italian Pulmonary Hypertension Association, for Italian Medical News, on the key role of patient associations – AIPInews, AIPI, Italian Pulmonary Hypertension Association

  • Tips about how to cope with the high temperatures when you are a pulmonary hypertension patient and announcement of the upcoming Family Weekend on September 29 – Brev’ Info, HTaPFrance, French pulmonary hypertension association

Should you desire a translations into your language, we are more than willing to provide them upon request.

Let’s join hands in this important initiative, actively participating in the dissemination of valuable information and sharing best practices.

Together, we can make a meaningful impact and empower the entire pulmonary hypertension community.

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