Hoarseness as a rare symptom of idiopathic pulmonary arterial hypertension due to Ortner Syndrome, American Journal of Case Reports, March 28, 2025

The case study reported in a recent article for the American Journal of Case Reports, describes a 32-year-old male patient with idiopathic pulmonary arterial hypertension (IPAH) who presented with hoarseness. The hoarseness was attributed to Ortner syndrome, where an enlarged pulmonary artery compressed the left recurrent laryngeal nerve, causing left vocal fold paralysis. Diagnostic workup […]

Hoarseness as a rare symptom of idiopathic pulmonary arterial hypertension due to Ortner Syndrome, American Journal of Case Reports, March 28, 2025 Read Post »

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out!

The latest issue of the quarterly Pathlight magazine of the US Pulmonary Hypertension Association, the PHA, celebrates pulmonary hypertension heroes. As National Volunteer Month approaches, the association acknowledges the people who make this organization a success. This issue also includes articles about imaging innovations, managing medication side effects and swimming with subcutaneous therapy.  To receive

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out! Read Post »

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog

Maleen Fischer, whose “blue lips” in infancy were dismissed by doctors for nearly four years before receiving a diagnosis of pulmonary arterial hypertension at age four. In a recent article for Cambridge Network News and in a blog for electronRx she shares how despite years on continuous IV medication and isolation during childhood and adolescence,

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog Read Post »

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025

Hall Skaara is a pulmonary arterial hypertension patient. His article about life as a patient has been published in the International Journal of Cardiology: Congenital Heart Disease. Hall was diagnosed with idiopathic pulmonary hypertension after cardiac issues and two ablations, but has transformed his diagnosis into an opportunity to help others. Despite physical limitations, he

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025 Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025

Natalia Maeva, a patient diagnosed with pulmonary arterial hypertension in 2009, shares a deeply personal account of living with the condition, focusing particularly on the harrowing experience of dyspnoea crises for Breathe. Natalia says that these crises, characterized by a visceral feeling of suffocation, fundamentally transformed her life, forcing her to recalculate every action and

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025 Read Post »

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025”

Looking back on the year 2024, PHAWARE’s founder Steve Van Wormer reflects on an extraordinary year of milestones that exemplify the association’s dedication to raising awareness and fostering innovation for the pulmonary hypertension community. Among the notable achievements: the successful launch of a groundbreaking new app, the remarkable milestone of 500 episodes of the inspiring

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025” Read Post »

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants!

The Alliance for Pulmonary Hypertension (AfPH) recently concluded its 14th webinar, marking the culmination of an educational initiative that began in June 2023. These virtual gatherings brought together internationally renowned experts in pulmonary hypertension, who shared their expertise on a comprehensive range of topics crucial to advancing patient care and quality of life. The diverse

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants! Read Post »

Prostacyclins Show New Hope for Inoperable CTEPH Patients: Meta-analysis Insights, Marisa Wexler, Pulmonary Hypertension News, November 6, 2024

A recent article on Pulmonary Hypertension News reports on the findings of a meta-analysis which suggest that prostacyclin pathway-targeting therapies hold promise for treating chronic thromboembolic pulmonary hypertension (CTEPH), particularly patients who are ineligible for surgery or experience persistent/recurrent symptoms after surgical intervention. However, the authors emphasize the need for larger-scale studies to confirm the

Prostacyclins Show New Hope for Inoperable CTEPH Patients: Meta-analysis Insights, Marisa Wexler, Pulmonary Hypertension News, November 6, 2024 Read Post »

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA

Between 0.5% and 5% of people who experience a pulmonary embolism (a blood clot) later develop chronic thromboembolic pulmonary hypertension (CTEPH). Learn more about pulmonary embolism and the risk for chronic thromboembolic pulmonary hypertension in the free Pulmonary Hypertension Association USA brochure titled “What You Need to Know After a Pulmonary Embolism” available at this

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA Read Post »

The RHU DESTINATION 2024 project to enhance the care of chronic thromboembolic pulmonary hypertension (CTEPH) patients through better identification and management

🔹 The RHU DESTINATION 2024 is a multidisciplinary partnership that aims to revolutionise the care of patients through better identification and management of chronic thromboembolic pulmonary hypertension, as well as by improving the quality of care and developing a “treat to cure” approach. 🔹 Coordinated by AP-HP, Assistance Publique – Hôpitaux de Paris, and bringing

The RHU DESTINATION 2024 project to enhance the care of chronic thromboembolic pulmonary hypertension (CTEPH) patients through better identification and management Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family

Lot is a vibrant young woman with an incredibly positive outlook on life, despite the fact that her daily routine is heavily influenced by her health. Born with a congenital heart defect, Lot was diagnosed with pulmonary arterial hypertension (PAH) at just six years old. Reflecting on her wait for donor lungs, Lot shares: “About

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family Read Post »

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship

Natalia Maeva, a dedicated pulmonary hypertension advocate and double lung transplant recipient, has accomplished an incredible milestone as part of the Bulgarian transplant team. Eight years after her life-saving operation, she won a gold medal in badminton at the European Transplant Sports Championship in Lisbon, Portugal, becoming the European champion in the 50-59 age category.

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship Read Post »

The key role of patient associations highlighted during discussions at the 5th French Pulmonary Hypertension Network Meeting, “Respiratory Medicine and Research”, Volume 86, 2024

The 5th French Pulmonary Hypertension Network Meeting, convened in Le Kremlin-Bicêtre, France, in 2023, served as a platform to examine current evidence and outstanding questions in pulmonary hypertension, particularly in the context of the recently published 2022 ESC/ERS Guidelines. The French Network is composed of some of France’s key experts in the field of pulmonary

The key role of patient associations highlighted during discussions at the 5th French Pulmonary Hypertension Network Meeting, “Respiratory Medicine and Research”, Volume 86, 2024 Read Post »

The UK Pulmonary Hypertension Association Chair, Dr Iain Armstrong, explains what happens next with sotatercept and what will be considered when it comes to making decisions for the UK

The first-in-class pulmonary arterial hypertension drug sotatercept was approved in March 2024 by the Food and Drug Administration (FDA) in the USA and the approval of the European Medicines Agency (EMA) is expected in the next few months. The UK Pulmonary Hypertension Association, PHA UK, has put together a short video, with its Chair Dr

The UK Pulmonary Hypertension Association Chair, Dr Iain Armstrong, explains what happens next with sotatercept and what will be considered when it comes to making decisions for the UK Read Post »

The Committee for Human Medicinal Products (CHMP) of the European Medicines Agency (EMA) has recommended granting a marketing authorisation for Winrevair (sotatercept)

On 28 June 2024 the European Medicines Agency has issued a press release to say that the CHMP (human medicines committee) has recommended granting a marketing authorisation in the European Union (EU) for Winrevair (sotatercept) to treat adult patients with pulmonary arterial hypertension (PAH), in combination with other specific PAH therapies, to improve exercise capacity. This is the first step

The Committee for Human Medicinal Products (CHMP) of the European Medicines Agency (EMA) has recommended granting a marketing authorisation for Winrevair (sotatercept) Read Post »

Sharing best practices in chronic thromboembolic pulmonary hypertension surgical and interventional treatments: insights from two world experts

The Alliance for Pulmonary Hypertension (AfPH) places a strong emphasis on the sharing of knowledge and best practices as a means to empower patients and family members and advance the understanding and treatment of pulmonary hypertension. This is the rationale behind the creation of the Pulmonary Hypertension Knowledge Sharing Platform, an open, inclusive, and dynamic

Sharing best practices in chronic thromboembolic pulmonary hypertension surgical and interventional treatments: insights from two world experts 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 »

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