The Pulmonary Hypertension Association‘s CEO Matt J. Granato shares the association’s plans to celebrate the 2024 World Pulmonary Hypertension Day and invites the global PH community to mark this longstanding and important awareness campaign around the theme of “unity”. Read more at this link on the PHA website
PHA Europe, the European Pulmonary Hypertension Association, is celebrating this year’s World Pulmonary Hypertension Day with a webinar on non pulmonary arterial hypertension forms of pulmonary hypertension, featuring world renowned expert expert Ardeschir Ghofrani as keynote speaker. May 5, 2024 – 16:00 CET Link: https://belaircenter.info/
The Spanish Foundation for Pulmonary Hypertension, Fundación Contra la Hipertensión Pulmonar, has been selected as winner of one of the prizes of the “Inocente Foundation” for its project on “Non-invasive Remote Monitoring for children with Pulmonary Hypertension”, which will be carried out at the Ramón y Cajal University Hospital.
The UK Pulmonary Hypertension Association launched a survey on nutrition and pulmonary arterial hypertension last year in March in which they asked patients about eating habits, food preferences, and cooking or weight management challenges. The findings were announced at the Pulmonary Vascular Research Institute (PVRI)’s congress in January 2024 and, more recently, on social media.
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
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
The winter 2023 edition of PHA Europe‘s Mariposa Journal, covering activities of the umbrella association and of its national member associations, was issued on March 30, 2024. The magazine can be downloaded at this link on the PHA Europe website
Winter 2023 edition of PHA Europe’s Mariposa Journal, March 30, 2024 Read Post »
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
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
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 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.
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: 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 »
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
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
“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.
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
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
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
