This week is “European Mental Health Week”. Take a moment to explore the resources available on this platform to help patients navigate the challenges of living with pulmonary hypertension

European Mental Health Week is a pan-European initiative that aims to raise awareness about the importance of mental health in our everyday lives. Set up and run by Europe’s largest independent mental health NGO Mental Health Europe (MHE), the fourth edition will take place from 22 May until 28 May 2023. Pulmonary hypertension has a significant impact on the lives […]

This week is “European Mental Health Week”. Take a moment to explore the resources available on this platform to help patients navigate the challenges of living with pulmonary hypertension Read Post »

The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project

The European Communication on Research Awareness Needs, the ECRAN project is an online platform that is available in five languages in addition to English (German, Italian, French, Polish, Spanish), which contains a wealth of information about clinical trials, and explains everything patients need to know in order to take part in them. Rea more on

The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project Read Post »

Common questions for the newly diagnosed, a web page developed by the UK Pulmonary Hypertension Association, PHA UK

The PHA UK’s website features a page dedicated to frequently asked questions by the newly diagnosed with pulmonary arterial hypertension, including: how to explain to people, in a simple way, what it is, what comes after diagnosis, what the currently available treatments are and what the general outlook for people with pulmonary hypertension is. The

Common questions for the newly diagnosed, a web page developed by the UK Pulmonary Hypertension Association, PHA UK Read Post »

May 20 is “International Clinical Trials Day”, a day to raise awareness about clinical trials and their contribution to public health

The International Clinical Trials Day is organised yearly on May 20, since 2014, by the Association of Clinical Research Professionals (ACRP), as an opportunity for the clinical research community to to celebrate what has been accomplished in this field and recommit to push even further. Learn more about International Clinical Trials Day at this link

May 20 is “International Clinical Trials Day”, a day to raise awareness about clinical trials and their contribution to public health Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” Read Post »

Pulmonary endarterectomy (PEA) Leads to Long-term QOL Improvement in People With CTEPH, study suggests, American Journal of Managed Care

Pulmonary endarterectomy (PEA) is the recommended first-line treatment for patients with chronic thromboembolic pulmonary hypertension (CTEPH), if they qualify for the procedure. Alternative therapies include balloon pulmonary angioplasty (BPA) or medical therapy. An article by Jared Kaltwasser for the American Journal of Managed Care, dated April 17, 2023, presents the results of a Swedish single

Pulmonary endarterectomy (PEA) Leads to Long-term QOL Improvement in People With CTEPH, study suggests, American Journal of Managed Care Read Post »

“Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, Advances in Pulmonary Hypertension, March 16, 2022

The authors of the study titled “Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, published in Advances in Pulmonary Hypertension, on March 16, 2022. Parents and caregivers of over 300 patients from a large paediatric pulmonary hypertension center were approached for participation in the survey, which was administered online and on

“Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, Advances in Pulmonary Hypertension, March 16, 2022 Read Post »

On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023

Team PHenomenal Hope, a US national nonprofit advocacy organization for pulmonary hyeprtrension, proudly unveiled its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in pulmonary hypertension on May 12, 2023. The symposium will be held on Friday, December 15, 2023, in Boston, Massachusetts, USA Experts in the field are invited to share original research by August

On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023 Read Post »

Findings of a study published in Thorax (BMJ Journals) highlights the importance of integrating pulmonary arterial hypertension patients’ perceptions in the elaboration of clinical trials – May 4, 2023

The aim of this study was to investigate the value given by patients’ and caregivers’ to components of composite outcomes in pulmonary arterial hypertension (PAH) clinical trials. There were 335 participants, of which 257 were patients with pulmonary arterial hypertension. The study findings revealed that most outcomes were considered of major or mild-to-moderate importance to

Findings of a study published in Thorax (BMJ Journals) highlights the importance of integrating pulmonary arterial hypertension patients’ perceptions in the elaboration of clinical trials – May 4, 2023 Read Post »

The UK’s Pulmonary Hypertension Association, PHA UK, offers an e-support service to patients, family members and caregivers

As not everyone is comfortable talking on the phone the PHA UK has set up an e-support online service to assist with emotional wellbeing, practical queries and problem-solving, signposting and connections. Contact the PHA UK at support@phauk.org

The UK’s Pulmonary Hypertension Association, PHA UK, offers an e-support service to patients, family members and caregivers Read Post »

The UK’s Pulmonary Hypertension Association (PHA UK)’s “Listening Line support service” offers dedicated time with a pulmonary hypertension professional to talk about mental wellbeing

The PHA Uk’s Listening Line support service offers its members and families dedicated time with a pulmonary hypertension professional to talk through concerns about mental wellbeing. Weekly appointments last for 45 minutes and are available in blocks of six. Read more and book an appointment at this link on the PHA UK website

The UK’s Pulmonary Hypertension Association (PHA UK)’s “Listening Line support service” offers dedicated time with a pulmonary hypertension professional to talk about mental wellbeing Read Post »

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories

http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories Read Post »

The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 2023 

Warmest congratulations to PHA Canada for its 15th anniversary! Check out their anniversary video on YouTube In English at this link in French at this link PHA Canada’s National PH Community Conference is coming up soon, on June 9-10, in Ottawa. Select conference sessions will be made available via Zoom. Here is the link to

The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 2023  Read Post »

AfPH’s webinar on Partnering with Patients and Shared Decision Making, June 6, 2023.

As part of the Alliance for Pulmonary Hypertension (AfPH) knowledge-sharing initiative, a webinar series has been developed in partnership with Prof. Marc Humbert, a leading world expert on pulmonary hypertension and Director of the French National Pulmonary Hypertension Reference Center. Six live events are planned for 2023 and will address the main innovations introduced by

AfPH’s webinar on Partnering with Patients and Shared Decision Making, June 6, 2023. Read Post »

The Alliance for Pulmonary Hypertension is proud to present its “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) initiative on this very special day for the pulmonary hypertension community! World PH Day, May 5, 2023

After a very intense two years of brainstorming sessions, about one hundred weekly online Zoom calls, and over one thousand email exchanges, here we are, ready to launch our Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP) and our online webinar series! This initiative is open to all those who wish to contribute and, as a constantly

The Alliance for Pulmonary Hypertension is proud to present its “Pulmonary Hypertension Knowledge Sharing Platform” (PH-KSP) initiative on this very special day for the pulmonary hypertension community! World PH Day, May 5, 2023 Read Post »

Physicians at the Medical Faculty of the Gazi University in Ankara, Turkey, celebrate World Pulmonary Hypertension on May 5 by launching the piece of music they have composed for patients

To commemorate World Pulmonary Hypertension 2023, May 5, physicians at the Medical Faculty, Gazi University – Ankara, will be launching the piece of music they have composed for their patients in the course of a concert. A member of the Turkish pulmonary hypertension association of Turkey, PAHSSc, and a patient, will also be contributing to the

Physicians at the Medical Faculty of the Gazi University in Ankara, Turkey, celebrate World Pulmonary Hypertension on May 5 by launching the piece of music they have composed for patients Read Post »

“Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine, April 20, 2023

A recent article titled “Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, published in the New England Journal of Medicine, reports on the results of a multicenter, double-blind, phase 3 trial in which adults with pulmonary arterial hypertension (functional class II or III) who were receiving stable background therapy were randomly assigned

“Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine, April 20, 2023 Read Post »

PHantasticals, an initiative to increase awareness of pulmonary hypertension among patients, caregivers and the general public, unveils its new website on World Pulmonary Hypertension Day 2023, May 5

PHantasticals is an awareness raising initiative promoted by Ferrer. It is addressed to patients, caregivers and society large. The website features testimonials from patients and health care professionals as well as useful infographics on pulmonary hypertension (PH), pulmonary arterial hypertension (PAH), and pulmonary hypertension due to Interstitial Lung Disease (PH-ILD) Learn more on the PHantasticals

PHantasticals, an initiative to increase awareness of pulmonary hypertension among patients, caregivers and the general public, unveils its new website on World Pulmonary Hypertension Day 2023, May 5 Read Post »

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