The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT)

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 […]

The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT) Read Post »

Coming up soon, the World Symposium on Pulmonary Hypertension 2024, the most important scientific event in the world this field!

The 7th edition of the World Symposium on Pulmonary Hypertension is being held on June 29-30/July 1, 2024, in Barcelona, Spain. The WSPH is the most important scientific event in the field of pulmonary hypertension. It has been convened every five years since the Evian edition in 1998 (including Venice 2003, Dana Point 2008, Nice

Coming up soon, the World Symposium on Pulmonary Hypertension 2024, the most important scientific event in the world this field! Read Post »

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge!

As dedicated volunteers for pulmonary hypertension associations, we know just how much work there is in putting together our newsletters. Beyond content creation, it involves research, writing, photo selection, layout design, printing, and distribution. Newsletters connect communities, providing updates on crucial developments. Our mission at PH-KSP is to break barriers, fostering the exchange of knowledge

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge! Read Post »

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023

Throughout the month of November 2023, the Pulmonary Hypertension Association (PHA) USA shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. More than 30 people with the condition participated. See their stories at this link on the Pulmonary Hypertension Association website. Coupled with those stories, the Pulmonary Hypertension Association also

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023 Read Post »

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant!

Anne-Marie Amilhat, a 73-year-old woman from France, received a diagnosis of pulmonary arterial hypertension in 1980 and underwent heart/lung transplant surgery in 1988. Recently, she joyously marked her 35th transplant anniversary surrounded by family and friends. The celebration was graced by the presence of Prof. Philippe Dartevelle, a thoracic surgeon at Marie Lannelongue Hospital, France,

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant! 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 »

Prof. Marc Humbert selects his highlights on the topic of pulmonary hypertension from the European Respiratory Society (ERS) 2023 Congress

European Respiratory Society (ERS) Past President Prof. Marc Humbert selects his highlights from the annual congress on the topic of pulmonary hypertension – noting the key messaging and findings from what was presented in this video featured on the ERS Respiratory Channel.

Prof. Marc Humbert selects his highlights on the topic of pulmonary hypertension from the European Respiratory Society (ERS) 2023 Congress Read Post »

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre

The European Respiratory Society (ERS) has issued an eight-episode series offering summaries of disease specific content from its annual congress which took place in Milan, Italy, September 20-23, 2023 In one of the episodes, European Respiratory Society (ERS) Past President Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre, selects his highlights from

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre Read Post »

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!

The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! 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

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

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes!

Micheal Garrett is a pulmonary hypertension caregiver from Humble in Texas, USA. He is a caregiver for his wife, who is 42, and was diagnosed in December 2017 with pulmonary arterial hypertension. Along with her pulmonary arterial hypertension diagnosis, she was also diagnosed with Lupus. She is on intravenous therapy with Veletri (epoprostenol). Michael started

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes! Read Post »

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages!

“Diagnosing and treating pulmonary hypertension – understanding the professional guidelines” is an easy to understand summary of the joint European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for pulmonary hypertension (PH). It was published on the European Lung Foundation (ELF) website on 02/11/2022. It is for people with pulmonary hypertension, or

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages! Read Post »

Understanding right heart catheterisation, the “gold standard” test to diagnose pulmonary hypertension: a new resource by the UK Pulmonary Hypertension Association, PHA UK

The PHA UK has added new information to their website area that’s dedicated to right heart catheterisation procedure, check it out at this link. Cardiac catheterisation is known as the ‘gold standard’ test to diagnose pulmonary hypertension. It is a procedure that is used to study the right side of the heart and it is

Understanding right heart catheterisation, the “gold standard” test to diagnose pulmonary hypertension: a new resource by the UK Pulmonary Hypertension Association, PHA UK Read Post »

Sharing best practices on how to implement shared decision making and support patient empowerment: Prof. Marc Humbert, Head of the French Pulmonary Hypertension National Referral network

In our ongoing efforts to advance the understanding and treatment of pulmonary hypertension, the Pulmonary Hypertension Knowledge Sharing initiative places a strong emphasis on sharing best practices. We are deeply grateful to Prof. Marc Humbert for graciously accepting our invitation to shed light on the crucial topic of shared decision making and patient empowerment within

Sharing best practices on how to implement shared decision making and support patient empowerment: Prof. Marc Humbert, Head of the French Pulmonary Hypertension National Referral network Read Post »

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose

Migdalia Denis, leader of the Latin America Pulmonary Hypertension Association (Sociedad Latina de Hipertensión Pulmonar), was invited on May 18, 2018, to deliver a TEDx talk. Migdalia has recently sent us the link to her talk and asked us to share it on the PH-KSP, in the hope that her message may inspire others to

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose 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 »

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association

Coline, a 34-year-old French pulmonary arterial hypertension patient living in Paris, diagnosed seven years ago, shares her tips on how to “style” a pump for intravenous infusion and on how to talk about it to one’s colleagues. The video is available at this link on the YouTube channel of HTaPFrance.

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association Read Post »

“My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 2023

Gabriele, a 47-year-old Italian national residing in Brescia, bravely opens up about his personal journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), aiming to raise crucial awareness within the pulmonary hypertension community. By sharing his experience, he hopes to shed light on this condition and its impact, offering support and insights to those who may be

“My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 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 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 »

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