Posted on July 4th 2024
There’s something rather special about over 1500 PH professionals, representing every corner of the world, coming together in the same place.
Here at the PHA UK we were privileged to be invited to the 7th World Symposia on Pulmonary Hypertension, hosted by the World Health Organisation and held in the Spanish city of Barcelona during the last weekend of June.
We were one of a handful of patient organisations exhibiting at the event, which takes place every five years and has a huge influence on patient care.
The symposia is split into different ‘taskforces’, made up of the world’s leading experts, who make recommendations in areas including treatment algorithms, how PH is classified, clinical trial design, and more.
PHA UK Chair Dr Iain Armstrong was invited to be part of the ‘patient perspective’ taskforce in 2018, and his influence led to the topic moving to the top of the bill in 2024.
Patients from America, Norway and Italy helped kick off the conference as part of a panel described by hosts as ‘doctors and patients side by side to create a roadmap of care’.
We brought the UK patient voice to proceedings by sharing a specially curated booklet of personal experiences from across our membership. The faces behind these stories made up the front of our stand (pictured above), as a reminder to everyone gathered of the importance of putting patients first. You’ll find these stories here.
Attendees were encouraged to show their commitment by posing with our special signs, and it was great to see so many from the UK specialist service getting behind our campaign.
Research conducted by our charity was shared by international presenters throughout the symposia, so your voices – captured in our surveys – are truly being heard worldwide. And EmPHasis-10, the quality-of-life measure developed by the PHA UK, was referenced multiple times during proceedings.
Best practice was shared, and valuable connections were formed, at what was a truly inspiring event. PH may be a rare disease, but there is a global army of experts working hard to advance treatment and care – as this unique symposia showed.
