Archive – PULMONARY HYPERTENSION

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw

In today’s healthcare landscape, the patient’s perspective holds increasing sway in pivotal decision-making processes across various sectors, including governmental agencies, healthcare institutions, insurance entities, and corporate entities. As the importance of incorporating patient feedback grows, initiatives aimed at equipping patients with a deeper understanding of these processes and objectives become paramount. Recognizing this need the […]

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“The added value of patient associations”, a publication by the European Patient Forum (EPF)

The European Patient Forum (EPF) published in 2017 a booklet titled “The Added Value of Patient Organizations”, which captures the crucial role of patient organizations in healthcare policy, capacity building, peer support, and research and development, as well as the challenges they face. This booklet highlights the significant impact these organizations have on shaping health

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How the European Society of Cardiology (ESC) Patient Forum is contributing to shaping cardiovascular care and clinical guideline development

A recent article, titled “The essential role of patients in advocacy and policy”, published in the European Heart Journal on July 21, 2023, describes the activities of the European Society of Cardiology (ESC) Patient Forum and how it is empowering patients in shaping cardiovascular care. The European Society of Cardiology established the “ESC Patient Forum”

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Proud that the Alliance for Pulmonary Hypertension has been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics!

We are proud to have been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics’ #RAREis program, which recognizes contributions to advancing, educating and addressing the needs of the rare disease community. We look forward to continuing to make a meaningful difference for those affected by pulmonary hypertension! The 2023 #RAREis Global Advocate Grant program was announced in February 2023

Proud that the Alliance for Pulmonary Hypertension has been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics! Read Post »

The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements

Sharing from the PHA’s Instagram page the news that that the “Safe Step Act” is moving to the US Senate floor for the first time and aims to limit step-therapy requirements. Current insurance policies in US require people to try less expensive treatments than what their doctors prescribe first. The PHA points out that for

The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements Read Post »

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022

PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022 Read Post »

Pulmonary Arterial Hypertension Patient Charter 2020

The pulmonary arterial hypertension “Patient Charter” is based on the 2015 European Society of Cardiology/European Respiratory Society (ESC/ERS) guidelines, which are used internationally, and was developed from the outputs of a meeting held in Berlin, Germany, in March 2019. The meeting participants included patients, patient advocacy group representatives and healthcare professionals from the pulmonary arterial

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