“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI

The IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute has created an 11-part series to support people living with pulmonary hypertension, and for their families and carers. The series is designed to help people living with pulmonary hypertension to feel more informed, confident and empowered.  Empowerment means gaining the knowledge, skills, […]

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI Read Post »

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones

The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks

The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks Read Post »

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

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

The Summer edition of PHA Europe’s “Mariposa Journal” reports on the exciting events held across Europe to celebrate World Pulmonary Hypertension Day, May 5

Huge success for this year’s World Pulmonary Hypertension Day on May 5! The summer edition of the Mariposa Journal reports on the exciting events organised in 22 European countries to celebrate this occasion, and on the social media campaign which accompanied it, which reached an estimated 6 million individuals worldwide. World PH Day is a

The Summer edition of PHA Europe’s “Mariposa Journal” reports on the exciting events held across Europe to celebrate World Pulmonary Hypertension Day, May 5 Read Post »

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 »

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