This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension.
One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and Patient Empowerment.‘ Additionally, the guidelines now recommend that pulmonary hypertension centers establish collaborative partnerships with patient associations.
In case you missed the Alliance for Pulmonary Hypertension’s December 12 webinar on the rise of pulmonary hypertension associations, or wish to revisit it, the slides and recording are now online.
🔹Learn more about the establishment of the first pioneering pulmonary hypertension patient support groups, the Pulmonary Hypertension ssociation, HTaPFrance and Pulmonale Hypertonie E.V., in the early 1990s, how they marked a pivotal moment in the narrative of this medical journey, and how patient associations have evolved to their current key role in shaping pulmonary hypertension care.
🔹Looking back, what were the main events leading up to the establishment of the first patient support groups? In the 19th century German pathologist Ernst Romberg laid the groundwork of pulmonary hypertension science, but progress seemed to stagnate until transformative events unfolded in the late 1960s.
🔹In 1967, a pulmonary hypertension epidemic erupted due to an appetite suppressant drug. This crisis prompted renewed interest in the condition, leading to the inaugural pulmonary hypertension symposium in 1973 in Geneva, Switzerland, sponsored by the World Health Organisation (WHO), and the first WHO official classification.
🔹Post-symposium, the U.S. N.I.H. established the first patient registry in 1981. The pivotal year 1982 saw Sir John Vane honoured with the he Nobel Prize for discovering prostacyclin, a breakthrough. The mid-80s brought proof-of-concept trials on epoprostenol, a prostacyclin analog, and the first randomized trials.
🔹The 1990s unfolded as a transformative era, marked by a deepened understanding of pulmonary hypertension thanks to pathology studies, the NIH registry findings, clinical trials and the commencement of the first lung transplant programs. A watershed moment occurred with the approval of Flolan, the first pulmonary hypertension drug, instigating a surge in research.
🔹It should also be mentioned that the emergence of pulmonary hypertension associations can be attributed, in part, to the groundwork laid by other advocacy groups in the 80s and 90s, such as those focused on HIV and breast cancer.
We have come a very long way since the 1990s! The current patient support landscape includes over 90 associations/networks, spread across six continents. We can all be proud, as active and dedicated members of the pulmonary hypertension community, for the outstanding results achieved, as outlined in the last part of the webinar.
The program for the 2024 Alliance for Pulmonary Hypertension series was established in close collaboration with Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, and a global authority in the field.
Speakers (in alphabetical order)
- Introduction – Pisana Ferrari Download the slides
- The “Pioneers”: the first world pulmonary hypertension associations
- The PHA – Matt Granato Download the slides
- HTaPFrance – Mélanie Gallant-Dewavrin Download the slides
- pulmonale hypertonie e.v. – Hans-Dieter Kulla Download the slides
- The Current Landscape: A 30-Year Overview of World PH Associations and Umbrella Organizations – Pisana Ferrari
- Evolution of the Role of Patient Associations and challenges for their future – Gergely Meszaros Download the slides
- Q&A Session
Learning objectives
This webinar aimed to provide a historical overview of the pulmonary hypertension association ‘movement’ and its evolution over the past three decades. We will explore its journey and highlight its current pivotal role in pulmonary hypertension care. Understanding this evolution is key to recognizing the substantial impact patient associations have had on shaping today’s PH care landscape.