Insights from a panel discussion on aging with rare diseases, including pulmonary hypertension, at the World Orphan Drug Congress, Barcelona, November 2, 2023

The World Orphan Drug Congress is the largest and most established orphan drugs and rare diseases meeting of its kind across the globe. Its 14th annual edition took place in Barcelona, Spain, from October 30 to November 3, 2023. There were 1,500+attendees, 300 speakers and 80+exhibitors. On November 2 the President of AIPI Italian Pulmonary Hypertension […]

Insights from a panel discussion on aging with rare diseases, including pulmonary hypertension, at the World Orphan Drug Congress, Barcelona, November 2, 2023 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 »

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 »

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 »

Hall Skaara, a pulmonary hypertension patient from Norway, represents the patient voice and PHA Europe at important Ferrer event

Hall Skaara, who is a pulmonary hypertension patient and has been a Project Manager for PHA Europe since 2017, was invited to represent the patient voice at Ferrer’s recent IMPACHT conference in Barcelona, Spain, together with Steve Jones from the European Pulmonary Fibrosis Federation (EU-PFF). “It was the fifth time Ferrer ran the conference and more than 150 pulmonologists

Hall Skaara, a pulmonary hypertension patient from Norway, represents the patient voice and PHA Europe at important Ferrer event Read Post »

20 Latin American patient advocacy groups, including for pulmonary hypertension, are speaking at the most important scientific event of respiratory health in Latin America, “SAREAL”

The Respiratory Health, Allergy, and Atopy Summit (“SAREAL” as it reads its acronym in Spanish) brings together organizations working for chronic respiratory diseases (prevalent and rare), allergic, and atopic conditions to explore the underlying connection and commonalities. This year it is taking place on August 11 and 12 in Punta Cana, the Dominican Republic. It

20 Latin American patient advocacy groups, including for pulmonary hypertension, are speaking at the most important scientific event of respiratory health in Latin America, “SAREAL” Read Post »

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023

The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023 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 »

The Pulmonary Hypertension Association South Africa (PHA SA) is partnering with the Jenna Lowe trust to host a Patient Symposium on May 13, 2023, in Cape Town – the very first of its kind, a historic date for the country and community

The Pulmonary Hypertension Association South Africa (PHA SA) is excited to partner with another organisation – the Jenna Lowe trust – to host a PH Patient Symposium in May for PH month in Cape Town – the very first of its kind so it is historic for the country and community. See below for the

The Pulmonary Hypertension Association South Africa (PHA SA) is partnering with the Jenna Lowe trust to host a Patient Symposium on May 13, 2023, in Cape Town – the very first of its kind, a historic date for the country and community 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 »

European Society for Organ Transplant (ESOT) Annual Congress 2023, September 17-20, 2023

The European Society for Organ Transplant (ESOT) Annual Congress is the most influential and major event of its kind and the largest gathering of the transplant community in Europe, bringing clinicians, surgeons, physicians, nurses, scientists, researchers and patients to review latest developments in transplantation.  For the first time ever a patient/patient advocate has been included

European Society for Organ Transplant (ESOT) Annual Congress 2023, September 17-20, 2023 Read Post »

European Respiratory Society (ERS) Annual Congress 2023, September 9-13, 2023

The European Respiratory Society (ERS)’s Annual Congress is an event that brings together the world’s respiratory experts to showcase all the latest advances in respiratory medicine and science.  Pulmonary vascular diseases are listed among among the congress’ “Priority topics for 2023”, and there will be sessions dedicated to pulmonary hypertension. Learn more about the congress

European Respiratory Society (ERS) Annual Congress 2023, September 9-13, 2023 Read Post »

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