Dear Friends, Colleagues, and Supporters,

Welcome to the Summer 2025 edition of Mariposa! This issue is fully dedicated to celebrating World PH Day 2025, a day when our community comes together to raise awareness and strengthen our voice for people living with pulmonary hypertension.

From Oslo to Lagos, Beijing to Washington, this year’s events showed the extraordinary creativity and determination of our community. It is not possible to mention them all here, but let me share a few representative examples that reflect the diversity, spirit, and impact of World PH Day 2025. In Portugal, patients and families gathered in the historic town of Batalha for a weekend of connection, studies, and a neon walk. In Latvia, more than 130 people joined the Oxygen Festival for physiotherapy, health screenings, and open conversations in a “World Café.” In the USA, advocates took their stories to Capitol Hill — and just one day later, a Congressman co-sponsored legislation to improve oxygen access, showing the impact of patient voices. In China, local groups combined baking and crafts with translated global stories, proving how solidarity crosses borders. In Austria, the Vienna Ferris Wheel and Ars Electronica lit up blue and violet, while Belgium’s Blue Lips campaign turned a simple gesture into a symbol of recognition and hope. In North Macedonia, hundreds ran and then gathered for music in a show of unity, while in Ukraine, yoga, poetry, and youth advocacy reminded all that “we are more than PH.” Bosnia and Herzegovina hosted the “Run for DAH” in Sarajevo, drawing 140 runners from across the Balkans. Meanwhile, in Norway, PH Norway joined the Coalition of Rare Diseases to push for faster access to precision medicine and clinical studies. And in Slovenia, Jona and Luka Kobler dedicated their record-breaking 102-hour sailing mission — an unofficial Guinness World Record — to raising awareness of PH, a feat that captured hearts and headlines. Alongside these national efforts, PHA Europe coordinated a major social media campaign under the slogan “Sometimes, it’s PH.”

Built around 73 patient stories, the campaign was translated into 15+ languages, paired with educational infographics and other visuals, and reached 6.1 million impressions with 25,000+ engagements — all organically. PHA Europe’s pages gained 700+ new followers on Facebook/Instagram and 54 on LinkedIn, with a median engagement ~18% higher than similar organisations. The now-iconic Zebra video once again helped explain misdiagnosis in a simple, powerful way.

A highlight of this year’s programme was the World PH Day webinar hosted at the Bel Air Center: “Pulmonary Hypertension and Climate Change.” Featuring Dr. Simon Clark, Dr. Mona Lichtblau, and Dr. Lucilla Piccari, and moderated by myself, the session explored how rising temperatures, wildfires, and pollution affect people with PH. Already viewed by more than 2,200 people, it underscored that climate change is not a distant threat — it is already worsening symptoms and disrupting fragile care systems.

A heartfelt thank you to all our member associations, partners, and volunteers who made this World PH Day such a success. Your energy, creativity, and commitment continue to inspire. A special thank you also goes to Maleen and BCHUB for the flawless execution of the WPHD campaign, and to Dora and Maleen for bringing everything together for this Mariposa edition.

Enjoy this special issue of Mariposa, filled with the highlights of World PH Day 2025 — from local events to global advocacy.

The journal is available from here: Mariposa Journal – 2025 Summer N.34

Warm regards,

Hall Skaara
Project Manager