Introducing the Pulmonary Hypertension Knowledge Sharing Platform

In the past 30 years, remarkable strides have been made in the field of pulmonary hypertension. Advances in understanding the disease, the approval of new therapies, advancements in surgical techniques, the establishment of expert centers, and the implementation of clinical guidelines, have significantly enriched our knowledge. In tandem with the advancements in pulmonary hypertension care, individuals impacted by this condition have emerged as proactive agents in shaping their own healthcare journeys. However, this wealth of invaluable information remains scattered across numerous websites, journals, reports, and publications worldwide, lacking a unified and systematic approach to sharing.

Introducing the Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP): an inclusive, collaborative hub designed to consolidate and disseminate knowledge relevant to pulmonary hypertension. Developed by a team comprising members of the Alliance for Pulmonary Hypertension (AfPH), a registered non-profit patient association based in Brussels, as well as pulmonary hypertension patients, family members, and experts in various fields, the PH-KSP aims to provide a central repository for information exchange. The PH-KSP logo encapsulates the essence of our platform: a symbol of the continuous flow and exchange of knowledge, akin to the dispersal of seeds through the air, nurturing cross-fertilisation and growth.

The PH-KSP 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. However, we also recognize the importance of addressing 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.

At the heart of the PH-KSP lies a profound belief in the transformative power of collective experience. By pooling our resources, sharing information, exchanging knowledge, and showcasing best practices, we can unlock tremendous value for the entire community. We aim for the platform to serve as a bridge, connecting individuals and organisations to create a collaborative ecosystem where everyone benefits.

Knowledge plays a vital role in empowering patients to effectively manage their condition and advocate for their rights. It enables meaningful dialogue with healthcare professionals, fostering active partnerships in care. It empowers patients to express their preferences and make informed decisions about their care. In the rapidly evolving healthcare landscape, where telemedicine is becoming increasingly prevalent, the ability to self-manage and navigate day-to-day challenges becomes crucial. A vast evidence base now also shows that empowered patients experience better health outcomes, and at potentially lower healthcare costs.

As a dynamic and interactive platform, the PH-KSP 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 the PH-KSP a powerful resource for all. We are entirely volunteer-driven, fueled by a passion for supporting the pulmonary hypertension community. Don’t miss our upcoming PH Knowledge Sharing Webinar Series, commencing on June 6th!

30 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

Would you like to get involved in the project?

Find out how by going to this link

Data privacy

The AfPH has consulted with a specialised EU GDPR (General Data Privacy Regulation) lawyer based in Brussels, Belgium, where the AfPH 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.

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