Introducing the Pulmonary Hypertension Knowledge Sharing initiative

The Pulmonary Hypertension Knowledge Sharing initiative is a collective effort, led by patients, and supported by passionate volunteers, committed to the dissemination of information about pulmonary hypertension across the community. The team behind it comprises the members of the Alliance for Pulmonary Hypertension (AfPH), a registered non-profit patient association based in Brussels, pulmonary hypertension patients, family members, friends and supporters. The project was self-financed, has minimal yearly overhead costs, and is run entirely by volunteers.

A valuable hub for all things related to pulmonary hypertension

The project’s website serves as centralised repository of expert-curated resources, in various formats and languages, accessible via this link, and includes dynamic sections on News and Events, consistently updated and specifically tailored to the pulmonary hypertension community. A dedicated section of the website, titled Our webinars, contains information about the AfPH’s pulmonary hypertension knowledge sharing web events. Six webinars are planned for the year 2023, exploring the innovations introduced by the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for the diagnosis and treatment of pulmonary hypertension. The Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP) 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.

The rationale behind the project

In the past 25-30 years enormous progress has been made in the field of pulmonary hypertension in terms of better understanding of the disease, approval of new therapies, advances in surgery, creation of expert centers, introduction of clinical guidelines and improved disease management strategies. In parallel with progress in the medical field, people affected by pulmonary hypertension have become more involved in shaping pulmonary hypertension care, acting as patient ambassadors, and joining forces worldwide to set up patient organisations and support groups, as well as broader patient networks. Innumerable successful initiatives have been implemented by such groups, often in collaboration with other relevant stakeholders, in the fields of awareness, advocacy and capacity building. All these activities have contributed to enriching the knowledge base of pulmonary hypertension. However, this wealth of invaluable information remains scattered across numerous websites, journals, reports, and publications worldwide, lacking a unified and systematic approach to sharing.

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

A comprehensive journey into pulmonary hypertension care

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 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.

Harnessing the power of collective experience

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.

Empowering patients through knowledge

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.

Join the PH-KSP in shaping a dynamic and interactive resource

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. Find out how you can get involved at this link

Content disclaimer

The information provided on the PH-KSP 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 AfPH does not endorse or recommend any commercial products or services.

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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