The Pulmonary Hypertension Knowledge Sharing Platform

You are on the landing page of the “Pulmonary Hypertension Knowledge Sharing Platform”, which was set up by the Alliance for Pulmonary Hypertension, a Brussels-based international non-profit organisation (IVWZ), in 2023.

The mission of the Alliance for Pulmonary Hypertension is to empower the patient community with the knowledge and resources necessary to lead fulfilling lives. To fulfil its patient empowerment mission, the Alliance for Pulmonary Hypertension launched the knowledge sharing platform in 2023, to serve as a comprehensive digital hub connecting patients, caregivers, healthcare professionals, and advocacy organizations worldwide. By facilitating direct access to expert resources and peer experiences, the platform aims to transforms how the pulmonary hypertension community shares vital information and supports one another.

The platform features a centralised Library containing almost 900 expert-curated resources, in various formats and languages, a section with the latest News, updated with an average of 15-20 entries per month, a calendar of the main scientific Events, and sections dedicated to the Alliance for Pulmonary Hypertension’s three key educational programs, its comprehensive live Webinars, the peer-to-peer support “PEP talks” video series, and a section devoted to our educational campaigns.

The knowledge sharing platform goes beyond conventional approaches to pulmonary hypertension care by adopting a holistic perspective that encompasses an extensive array of topics. From cutting-edge research and innovative treatments to surgical advancements, mental well-being, and lifestyle considerations, the platform covers a broad spectrum of specific aspects. We also believe it is important to address the broader issues, such as patient engagement, emerging trends in medicine, and the evolving landscape of digital health. By addressing both the specific and overarching issues, we recognise the interconnected nature of various facets that impact the lives of individuals with the condition and ensure a comprehensive resource that caters to their multifaceted needs.

The rationale behind the project

Over the past 25-30 years, there has been significant progress in the field of pulmonary hypertension: advances in understanding the disease, new treatment options, surgical techniques, creation of specialized centers, development of clinical guidelines, and improved disease management. In parallel, patients have become more active in shaping care, serving as ambassadors, and forming global patient organizations and networks. These groups, often collaborating with various stakeholders, have led successful initiatives in raising awareness, advocacy, and capacity building. Despite the abundance of valuable information generated in the field, it remains scattered across multiple sources, without a unified system for sharing and consolidating this knowledge. The knowledge sharing platform logo encapsulates the essence of the initiative: a symbol of the continuous flow and exchange of knowledge, akin to the dispersal of seeds through the air, nurturing cross-fertilisation and growth.

Thirty years of progress at a glance

We have summarised some of the most significant developments in pulmonary hypertension care in past years as a word cloud. See also our infographic with the history of pulmonary hypertension science at this link

Join us in shaping a dynamic and interactive resource

As a dynamic and interactive platform, the Pulmonary Hypertension Knowledge Sharing Platform is constantly evolving and welcomes your input to shape its future. Your suggestions, improvements, and feedback are essential in ensuring its relevance and usefulness. Join us on this transformative journey and together, we can make it a powerful resource for all. Find out how you can get involved at this link

Content disclaimer

The information provided on this website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs. The Alliance for Pulmonary Hypertension does not endorse or recommend any commercial products or services.

Data privacy

The Alliance for Pulmonary Hypertension has consulted with a specialised EU GDPR (General Data Privacy Regulation) lawyer based in Brussels, Belgium, where the Alliance for Pulmonary Hypertension has its headquarters, in order to ensure that GDPR legal requirements were met in our Privacy policy, Cookie policy, Terms of use, Content curation policy and Authorisation to publish official documents.