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 »
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
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
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
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
Join the Pulmonary Hypertension Association, PHA, for the upcoming “Discovering New Pulmonary Hypertension Therapies on the Horizon” PHA Live webinar on Wednesday, Feb. 21 at 2 pm. EST/ 7 p.m. UTC. During the webinar, Sandeep Sahay, MD, MSc, ATSF, will review: Don’t miss this opportunity to gain insights into these promising therapies that will help manage your
Vittorio Vivenzio, President of the Italian Pulmonary Hypertension Association AMIP ODV, has released a new educational video on the association’s social media platforms. The video offers an easily comprehensible and “light” approach to understanding the intricate mechanisms behind the condition and the challenges of obtaining a timely and accurate diagnosis. It underscores the significance of
If you have undergone a lung or heart transplant, or are you considering or preparing to receive a transplant, consider join the Pulmonary Hypertension Association USA (PHA)’s new “Transplant for Pulmonary Hypertension” Facebook Group, to connect with others who have received a transplant or are in the transplantation process. Sign up at this link on
The Team PHenomenal Hope Award Program rewards studies of novel concepts in pulmonary hypertension with a potential to transform the field. The award is not limited to any pulmonary hypertension groups, pediatrics, or adult studies. Eventual clinical applicability is expected. As such, this program will provide an opportunity for individuals to affect the quality of
A great initiative by the Pulmonary Hypertension Association UK which recognizes the essential role caregivers play in pulmonary hypertension care and provides a supportive environment where they can connect, exchange experiences, and offer each other guidance. 👏 Sign up for at this link on the PHA UK Facebook page
This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension. One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and
Maggy Surace, President of the French Pulmonary Hypertension Association HTaPFrance, and Mélanie Gallant Dewavrin, Director of HTaPFrance, have been invited to participate remotely in the 5th Pulmonary Hypertension Awareness Day organised by the Algerian Pulmonary Hypertension Association, HTAP Algérie. The event is taking place at the Hotel Sheraton, Algiers, on Saturday, the 6th of January.
