Navigating sex and intimacy while living with pulmonary hypertension, a live webinar organised by the Pulmonary Hypertension Association of Canada (PHA Canada), April 29, 20:00 CET

Drs. Vargas and Ventetuolo will discuss sexual health and intimacy for individuals living with pulmonary hypertension and their partners in this PHA Canada live webinar on April 29, 2024. They will explore prior research, clinical observations, and insights gathered from their own interviews and surveys with pulmonary hypertension patients. This webinar aims to shed light […]

Navigating sex and intimacy while living with pulmonary hypertension, a live webinar organised by the Pulmonary Hypertension Association of Canada (PHA Canada), April 29, 20:00 CET Read Post »

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages

The full transcripts of the Alliance for Pulmonary Hypertension’s 2023 six webinars are now available! The transcripts encapsulate invaluable insights that continue to resonate with current trends and emerging issues, serving as a vital resource for our community. They are now in a format that can be translated into 40 languages, thanks to the embedded

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages Read Post »

Outsanding scientific program for the French Pulmonary Hypertension Association’s Annual General Assembly, April 6 2024

The Annual General Assembly of the French Pulmonary Hypertension Association HTaPFrance is taking place in Paris on Saturday the 6th of April 2024 in Paris. The morning program is dedicated to the presentation of the annual report of activities, vote on financial report and approval of new members of the Board. The afternoon program features

Outsanding scientific program for the French Pulmonary Hypertension Association’s Annual General Assembly, April 6 2024 Read Post »

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024 Read Post »

The Holland Hybrid Heart consortium receives €11 M grant for its research on a robotic heart for people with severe heart failure

The Holland Hybrid Heart (HHH) consortium brings together universities, higher professional education, companies and patient organisations. The Dutch pulmonary hypertension association Stichting Pulmonale Hypertensie is part of this consortium. The consortium has been awarded a grant of 11 million euros from the National Science Agenda for its research on a soft implantable robotic heart for

The Holland Hybrid Heart consortium receives €11 M grant for its research on a robotic heart for people with severe heart failure Read Post »

Proud and honoured to introduce the Alliance for Pulmonary Hypertension’s Scientific Committee

The Alliance for Pulmonary Hypertension is very honoured to present its Scientific Committee, featuring some of the world’s most renowned experts in the field of pulmonary hypertension. The Scientific Committee will play a pivotal role in supporting the Alliance’s mission to share knowledge and expertise about pulmonary hypertension via its Pulmonary Hypertension Knowledge Sharing Platform.

Proud and honoured to introduce the Alliance for Pulmonary Hypertension’s Scientific Committee Read Post »

The first pulmonary hypertension paediatric center in western Ukraine has opened in Lviv

Link: The Children’s Center for Pulmonary Hypertension in Lviv, Ukraine opened on 28 February 2024 thanks to the hard work of the Sister Dalilah Charitable Foundation, the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA), the Paediatric Cardiology Department and hospital management teams at the St. Nicholas Hospital of the First Medical Union of Lviv and

The first pulmonary hypertension paediatric center in western Ukraine has opened in Lviv Read Post »

Meet the Alliance for Pulmonary Hypertension Board members!

Meet the Alliance for Pulmonary Hypertension Board members: a dedicated team of passionate volunteers, each with a longstanding experience in patient advocacy within their own national pulmonary hypertension associations. The President of the Alliance, Ioanna Alysandratou Ιωάννα Αλυσανδράτου leads the Hellenic Community for Pulmonary Hypertension; Greece, Hans-Dieter Kulla is President of Pulmonale Hypertonie E.V., Germany, Luc MATTHYSEN is President of HTAP

Meet the Alliance for Pulmonary Hypertension Board members! Read Post »

The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT)

Renamed “Cure HHT” in 2014, the HHT Foundation International was founded by a passionate group of patient families and physicians, who shared a hope for a better future for those with hereditary hemorrhagic telangiectasia (HHT). Since its establishment in 1991, Cure HHT has consistently been at the center of the national (US) and global effort

The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT) 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 »

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension

“Pongo” serves as the mascot of the Greek Pulmonary Hypertension Association. This elephant doll features a unique characteristic: a minuscule nostril that impedes its ability to breathe adequately, leading to its striking purple hue caused by oxygen deprivation. It was create to educate children to recognize a physical diversity that may not always be visible.

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension Read Post »

Launched today, Rare Disease Day 2024, the PHA Europe “BEL AIR” virtual conference center for pulmonary hypertension

The BEL AIR CENTER is a virtual conference center, divided into several “rooms” where visitors can find and view presentations from leading pulmonary hypertension experts and from PHA Europe’s industry partners, patient association information booths, an art gallery with works by patients and health care professionals, and a networking café. Prof. Marc Humbert, Director of

Launched today, Rare Disease Day 2024, the PHA Europe “BEL AIR” virtual conference center for pulmonary hypertension Read Post »

2023 Italian pulmonary hypertension awareness campaign wins “Best Patient Advocacy Digital Campaign of the Year”!

The 2023 awareness campaign “Viaggio alla scoperta della PAH” (A trip to discover pulmonary arterial hypertension), has won the Life Sciences Excellence award for the “Best Patient Advocacy Digital Campaign of the Year”! A very important recognition for this collaborative effort by AIPI Italian Pulmonary Hypertension Association, AMIP Associazione Malati Ipertensione Polmonare, GILS – Gruppo Italiano per la

2023 Italian pulmonary hypertension awareness campaign wins “Best Patient Advocacy Digital Campaign of the Year”! Read Post »

Live webinar on new therapies by the US Pulmonary Hypertension Association’s, Feb. 21, at 2 p.m. EST

A this PHA live webinar speakers Sandeep Sahay, and Vallerie V. McLaughlin discussed hopeful discoveries from late-stage clinical trials and the differences between current symptom management practices and new disease-modifying therapeutics. The webinar will be moderated by PHA’s Elizabeth Joseloff. This webinar covered the following topics: • The differences between the current symptom management practices

Live webinar on new therapies by the US Pulmonary Hypertension Association’s, Feb. 21, at 2 p.m. EST Read Post »

Coming up on March the 1st 2024, the German Pulmonary Hypertension Association (pulmonale hypertonie e.v.)’s meeting in Hamburg

Coming up on March the 1st, 13:30 – 17:30, the German Pulmonary Hypertension Association’s Pulmonale Hypertonie E.V. ‘s meeting in Hamburg. A very comprehensive program, impressive panel of speakers! Not to be missed! Hans-Dieter KullaProf. Dr. Werner SeegerProf. Dr. Ardeshir GhofraniProf. Dr. Khodr TelloDr. Athiththan YogeswaranDr. Nils KremerProf Dr Matthias HeckerProf. Dr. Karsten KrügerProf. Dr. Natascha Sommer Find out

Coming up on March the 1st 2024, the German Pulmonary Hypertension Association (pulmonale hypertonie e.v.)’s meeting in Hamburg Read Post »

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources

The Stichting Pulmonale Hypertensie / PH Association the Netherlands has expanded their website considerably with articles about different aspects of living with pulmonary hypertension: 🔹 Intimacy and sexuality🔹 Studying with PH🔹 PH and work🔹 Financial issues🔹 Nutrition🔹 Travel and holidays🔹 Children and PH🔹 Exercise and sports🔹 Government support at home🔹 Benefits for disable people NB!

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources Read Post »

A guide to intimacy for pulmonary hypertension patients published the US Pulmonary Hypertension Association, PHA

This guide has been created for adult members of the pulmonary hypertension community interested in or engaged in physically intimate and/or sexual activity. The guide addresses, inter alia, some common “myths” about sex in pulmonary hypertension, eg. that if you are a patient you are not sexual or desirable, that there are more important things

A guide to intimacy for pulmonary hypertension patients published the US Pulmonary Hypertension Association, PHA Read Post »

Latest survey by the UK Pulmonary Hypertension Association, PHA UK, reveals persistent challenges faced by patients, notably in receiving a diagnosis

The findings from the Pulmonary Hypertension Association UK‘s latest major survey, presented at the recent Pulmonary Vascular Research Institute (PVRI) conference in London, underscore the persistent challenges faced by pulmonary hypertension patients in receiving a diagnoses. Time to diagnosis remains a critical issue, with over half of the respondents reporting it took more than a year to receive

Latest survey by the UK Pulmonary Hypertension Association, PHA UK, reveals persistent challenges faced by patients, notably in receiving a diagnosis Read Post »

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