“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are

“Exploring PH with KiKi the Koala” has been written and designed by 22-year-old Maryam, who was inspired by her little sister Fatima’s experiences with pulmonary hypertension. The book is aimed at children aged around three to nine. Readers can follow KiKi’s journey through learning how to cope with pulmonary hypertension and learning just how special […]

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are Read Post »

“How your patient is really feeling: the emotional hinterland of a cardiac diagnosis”, European Heart Journal, 8 January 2024

The authors of this article, titled “How your patient is really feeling: the emotional hinterland of a cardiac diagnosis“, published on the European Heart Journal on January 8, 2024, focus on the impact of receiving and living with a cardiac disease diagnosis, and in particular to the psychosocial aspects, which, they say, continue to be underrepresented in

“How your patient is really feeling: the emotional hinterland of a cardiac diagnosis”, European Heart Journal, 8 January 2024 Read Post »

Ieva Plume Receives Prestigious Ombudsman Award for Advocacy in Support of People with Disabilities of the Republic of Latvia

In a ceremony held on December 5, 2023, Ieva Plume, Chairperson of the Latvian Pulmonary Hypertension Association and Board member at the Latvian Alliance of Rare Diseases, was honoured with the Annual Award for Supporting People with Disabilities by the Ombudsman of the Republic of Latvia. This distinguished accolade was presented in the category of

Ieva Plume Receives Prestigious Ombudsman Award for Advocacy in Support of People with Disabilities of the Republic of Latvia Read Post »

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension

We would like to thank our friends and colleagues at the Dutch Pulmonary Hypertension Association for having shared with us the very touching story of Rob van der Aa. Rob is a remarkable individual who, regardless of the physical toll of pulmonary arterial hypertension, strives to contribute meaningfully to society, dedicating himself to both academic

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension Read Post »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension

This article was originally published in “Papillon”, the magazine of the Dutch Pulmonary Hypertension Association’s, in the first edition of 2023, at pages 8-9. The author is Anita Harte. We extend our heartfelt thanks to Rob for having shared his journey with us. Rob (39) has familial pulmonary arterial hypertension. He is a member of

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Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh

Gergely Meszaros, a pulmonary hypertension advocate and Project Manager at the European Reference Network for Rare Lung Diseases, ERN-LUNG, was invited to speak at the Association of Cardiovascular Nursing & Allied Professions (ACNAP) of the European Society of Cardiology Annual Congress in Edinburgh, UK, on June 23-24, 2023. Gergely’s talk was about the 2022 joint European Society

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh Read Post »

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023

Author: Pisana Ferrari, May 25, 2023, based on interview Introduction In the past few decades, significant strides have been made in the field of chronic thromboembolic pulmonary hypertension (CTEPH), encompassing enhanced disease comprehension, innovative therapies and surgical advancements. However, living with CTEPH continues to pose physical, practical, emotional, and social challenges for patients, families, and

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023 Read Post »

A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat

From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of

A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat Read Post »

The French, Swiss and German pulmonary hypertension associations joint meeting in Freiburg im Breisgau, April 22, 2023

The German, French and Swiss pulmonary hypertension associations held a joint meeting in Freiburg im Breisgau on April 22, 2023. An information stand was set up by ph e.v., the German pulmonary hypertension association, organiser of the meeting, on the square where the market which is held every Saturday morning, near the cathedral. Our brochures,

The French, Swiss and German pulmonary hypertension associations joint meeting in Freiburg im Breisgau, April 22, 2023 Read Post »

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023

Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023 Read Post »

Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023

HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers

Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023 Read Post »

Mapping the main stakeholders in pulmonary hypertension care, a brief summary by Pisana Ferrari

The main stakeholders in pulmonary hypertension care, a brief summary Author: Pisana Ferrari Last updated December 13, 2024 The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the

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“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, European Heart Journal Supplements

Summary This article for the European Heart Journal Supplements has been written by two pulmonary arterial hypertension patients who describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with pulmonary arterial hypertension are living longer, it is important that they

“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, European Heart Journal Supplements Read Post »

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari

Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari Read Post »

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