Celebrating the 12 year anniversary of the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), and its amazing achievements!

Our warmest congratulations to our friend and colleague Ieva Plume, President of PHA Latvia, Pulmonālās hipertensijas biedrība (PHB), one of the Founding Members of the Alliance for Pulmonary Hypertension, for their 12th anniversary! Twelve years of amazing achievements! Message sent by Ieva Plume “On August 4, 2023, the Latvian Pulmonary Hypertension Association (PHB) celebrated its […]

Celebrating the 12 year anniversary of the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), and its amazing achievements! Read Post »

Webinar on “Patient-Reported Outcome Measures and Their Role in Pulmonary Hypertension Care and Research”

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript NB. This transcript can be translated into your preferred language – use orange button at the bottom centre of this page to select

Webinar on “Patient-Reported Outcome Measures and Their Role in Pulmonary Hypertension Care and Research” Read Post »

Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST

Pregnancy in pulmonary hypertension is a very sensitive and multifaceted topic. Beyond medical considerations, cultural, religious, and personal beliefs play pivotal roles, adding layers of complexity to the decision-making process. Navigating this delicate journey requires a comprehensive understanding of each individual’s unique circumstances and values. Panelists Karen M. Olsson MD – Department of Respiratory Medicine,

Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available

The recording of the webinar organised by the Pulmonary Hypertension Association (PHA) on June 22, 2023 is now available at this link on the PHA YouTube channel. The webinar featured Pediatric Pulmonary Hypertension experts, Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC and parents, Jayna Wall and Jeff Harpp. The panel shared an overview

Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available Read Post »

The AfPH webinar on “Patient reported Outcome Measures in Pulmonary Hypertension Research and Care”, July 27, 2023

The AfPH’s second webinar in the six part series exploring the innovations introduced by the 2022 ESC/ERS clinical guidelines on pulmonary hypertension was held on July 27. Patient-Reported Outcome Measures (PROMs) are currently underused in the context of pulmonary hypertension. While their importance in capturing the patient perspective and improving patient care is well recognized,

The AfPH webinar on “Patient reported Outcome Measures in Pulmonary Hypertension Research and Care”, July 27, 2023 Read Post »

Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available

“PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP. TRANSCRIPT DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage

Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available Read Post »

Gathering Strength and Expertise: HTaPFrance’s Annual Meeting Unites Patients, Families, and Scientific Experts on June 10th

This year the HTaPFrance’s Annual General Assembly was held on the 10th of June via video conference, bringing together approximately 45 people. he association operates thanks to two employees and of course volunteers who dedicated 1 093 hours of volunteer work in 2022. These volunteer hours are valued in the accounts and represent €12,339, or 0.7 full-time equivalent. HTaPFrance keeps track of volunteer hours, because

Gathering Strength and Expertise: HTaPFrance’s Annual Meeting Unites Patients, Families, and Scientific Experts on June 10th Read Post »

The Afph’s first webinar on “Partnering with patients and shared decision making in PH care”, June 6 2023

We are delighted that around 50 people attended our webinar live across all 3 platforms (LInkedIn, Facebook and YouTube) and that the event has received 100s of views in the following days. We had good engagement from the audience and we are looking forward to the next event! We take the occasion to warmly thank

The Afph’s first webinar on “Partnering with patients and shared decision making in PH care”, June 6 2023 Read Post »

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST

Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST Read Post »

Recording now available for the PHA Europe webinar with Prof. Sean Gaine, May 4, 2023, on “Work in progress: Emerging hope in PH”

On the occasion of World Pulmonary Hypertension Day PHA Europe organised a live webinar with Prof. Sean Gaine, titled «Work in Progress: Emerging Hope in PH». on May 4th at 7 pm CET. Prof. Sean Gaine is Consultant Respiratory Physician at Mater Misericordiae University Hospital in Dublin, Ireland, and director of the National Pulmonary Hypertension

Recording now available for the PHA Europe webinar with Prof. Sean Gaine, May 4, 2023, on “Work in progress: Emerging hope in PH” Read Post »

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible

On 13 April 2023 the Asociación Nacional de Hipertensión Pulmonar, Spanish pulmonary hypertesion association, hosted a webinar titled “Pulmonary hypertension and nutrition: can diet help in the treatment of PH?”, featuring as speaker Ms Marina Sisso, a dietician and clinical nutritionist at the Hospital Clínic de Barcelona, specialised in the area of Pulmonology and Cardiology.

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible Read Post »

The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023

Save the date! The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023. This year’s theme is “Moving forward together,” reflecting the spirit of unity and progress within the pulmonary hypertension community. The event features a dynamic program, including informative presentations on clinical

The Dutch Pulmonary Hypertension Association is delighted to announce its 2023 Annual Patient Meeting, taking place in Nijkerk on November 11, 2023 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 »

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 »

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022

PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022 Read Post »

European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic”

This live online discussion organised by the European Respiratory Society (ERS) was held on March 23, 2022, and focused on the experiences and learnings of specialists and patients in the fields of idiopathic pulmonary fibrosis, pulmonary hypertension, cystic fibrosis and bronchiectasis ,since the emergence of COVID-19. ERS President Elect Professor Marc Humbert and European Respiratory

European Respiratory Society (ERS) web event on “Living with rare respiratory diseases through the COVID-19 pandemic” Read Post »

Live web event on “Improving lung health through the future European Health Data Space”, MEP Lung Health Group

On February 8 2022 the MEP Lung Health Group organised a virtual event on “Improving lung health through the future European Health Data Space”, hosted by the Group members Co-Chair MEPs Manuel Pizarro (S&D – Portugal) and Sara Cerdas (S&D – Portugal). Panelists included EU policy makers, digital health experts, healthcare professionals, and patient representatives

Live web event on “Improving lung health through the future European Health Data Space”, MEP Lung Health Group Read Post »

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