Former pulmonary arterial hypertension patient shares her transplant journey and stresses the importance of education, Pulmonary Hypertension News, May 16 2024

Anna Jeter is an artist and writer living in Excelsior, Minnesota. She was diagnosed with pulmonary arterial hypertension in 1999 at the age of 4 and received a lifesaving heart-lung transplant in 2018. In an article published recently in Pulmonary Hypertension News, Anna encourages other pulmonary arterial hypertension patients to conduct thorough research and familiarize […]

Former pulmonary arterial hypertension patient shares her transplant journey and stresses the importance of education, Pulmonary Hypertension News, May 16 2024 Read Post »

April 28 is ESOT, European Society for Organ Transplantation, Action Day, an annual observance which calls for enhanced cooperation between EU member states to address inequalities in transplantation

April 28 is ESOT – European Society for Organ Transplantation Action Day. ESOT is calling for enhanced cooperation among EU member states to empower transplant centres in delivering consistent, high-quality transplantation service ahead of the EU elections. ESOT is looking to drive the following 5 actions in the European Parliament between 2024 and 2029: Read

April 28 is ESOT, European Society for Organ Transplantation, Action Day, an annual observance which calls for enhanced cooperation between EU member states to address inequalities in transplantation Read Post »

A groundbreaking medical innovation known as the “sentinel skin flap” may hold the key to early detection of rejection in lung transplant patients

Could a medical innovation known as the “sentinel skin flap” hold the key to early detection of rejection in lung transplant patients? This pioneering technique, currently under investigation in a trial conducted by the University of Oxford and NHS Blood and Transplant, offers new hope for enhancing post-transplant care. Leading the charge in this groundbreaking trial is Henk Giele,

A groundbreaking medical innovation known as the “sentinel skin flap” may hold the key to early detection of rejection in lung transplant patients Read Post »

The remarkable journey of two individuals with hand transplants, Theo Kelz and Vasyly Rohovyy, testifies to the huge progress made in the field in past decades

Two exceptional people feature in this photo: on the left Mr. Theo Kelz, the first patient to have a hand transplant in Austria in the year 2000, and on the right Mr Vasyly Rohovyy, who had both hands transplanted in Vienna in 2006.  The photo was taken under the portrait of Professor Raimond Margraiter, the

The remarkable journey of two individuals with hand transplants, Theo Kelz and Vasyly Rohovyy, testifies to the huge progress made in the field in past decades Read Post »

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 »

Why the recent US revision of the ICD-10-CM to include codes for lung allograft dysfunction matters for pulmonary arterial hypertension

The International Classification of Diseases (ICD) is a medical coding system crafted by the World Health Organization (WHO). It serves as the primary foundation for health recording and disease statistics across various levels of care, including primary, secondary, and tertiary care settings, as well as on death certificates to determine causes of mortality. These meticulously

Why the recent US revision of the ICD-10-CM to include codes for lung allograft dysfunction matters for pulmonary arterial hypertension Read Post »

New! The Pulmonary Hypertension Association (PHA) launches Facebook page for pulmonary hypertension patients having undergone a lung transplant or preparing to receive one

If you have undergone a lung or heart transplant, or are you considering or preparing to receive a transplant, consider join the Pulmonary Hypertension Association USA (PHA)’s new “Transplant for Pulmonary Hypertension” Facebook Group, to connect with others who have received a transplant or are in the transplantation process. Sign up at this link on

New! The Pulmonary Hypertension Association (PHA) launches Facebook page for pulmonary hypertension patients having undergone a lung transplant or preparing to receive one Read Post »

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT)

In the past few months, the European Society for Organ Transplant (ESOT) channels have been running a campaign called “Take 2 – the new Me after a transplant”. The campaign seeks to empower patients by offering them valuable and reliable information and resources that can enhance their pre and post-transplant journey and raise public attention

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT) 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 »

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 »

A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation

The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work

A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation Read Post »

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023

This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023 Read Post »

Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant

A study titled “Cytokines Removal During Ex-Vivo Lung Perfusion: Initial Clinical Experience”, by researchers Boffini et al. was published in August 2023 in Transplant International. Covering a period of 10 years, from 2011 to 2020, research by has demonstrated for the first time – on an unparalleled large case series of 54 lung treatments intended

Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant Read Post »

It’s today, October 7! The 2023 edition of the European Day for Organ Donation and Transplantation (EDD)

Sponsored by the European Directorate for the Quality of Medicines & HealthCare (EDQM), Council of Europe in a different country every year since 1996, the European Day for Organ Donation and Transplantation (EDD) aims to raise public awareness of the need for organ, tissue and cell donation and promote the principle of voluntary and non-remunerated donation.

It’s today, October 7! The 2023 edition of the European Day for Organ Donation and Transplantation (EDD) Read Post »

2023 marks the 40th anniversary of the first successful heart-lung transplant in Europe – on a pulmonary hypertension patient – by legendary thoracic surgeon Prof. Magdi Yacoub

This year marks the 40th anniversary of the first successful heart-lung double transplant for a pulmonary hypertension patient in the United Kingdom by legendary thoracic surgeon Prof. Magdi Yacoub. In the early 1980s, after the successful introduction of the immunosuppressive drug cyclosporin A, Prof. Magdi Yacoub sought to push the boundaries of cardiac surgery. In

2023 marks the 40th anniversary of the first successful heart-lung transplant in Europe – on a pulmonary hypertension patient – by legendary thoracic surgeon Prof. Magdi Yacoub 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 »

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages

Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages Read Post »

Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023

The annual congress of the ESOT – European Society for Organ Transplantation is the largest and most influential scientific event in the field of transplantation science in the world. This year, patients and their well-being took center stage, with many sessions dedicated to shared decision making, shared care, and patient-related issues. The congress was attended

Patients take centre stage at the Annual Congress of the European Society for Organ Transplant in Athens, September 17-20, 2023 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 »

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