Vacation is important, even if you have pulmonary hypertension. “Everyone needs a break now and then,” says Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC. In the latest edition of “Papillon,” the magazine of PHA Netherlands, she provides some tips for patients on vacation and says, “If there is anything we can support, […]
A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has
Most people with pulmonary hypertension have specific dietary needs that are often overlooked in healthy recipe books and websites. The Pulmonary Hypertension Association, PHA, is calling on the community to help collect healthy recipes such as low-sodium dishes, pulmonary hypertension-friendly desserts or nutrient-rich meals, to support and inspire others on their wellness journey. Learn more
“Unraveling the Genetics of Pulmonary Hypertension” explored the genetic underpinnings of this complex disease. Our panel of experts, including a patient, explored the latest research, information on genetic mutations associated with pulmonary hypertension, and practical guidance on genetic counseling and testing. Speakers Prof David Montani, Department of Respiratory and Intensive Care Medicine, Pulmonary Hypertension National
Unraveling the genetics of pulmonary hypertension webinar Read Post »
The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI. You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available
Only 2 weeks to go to the World Symposium on Pulmonary Hypertension – June 29 to July the 1st, 2024, Barcelona. The Alliance for Pulmonary Hypertension will have six delegates attending. Visit our booth and meet the team! Ioanna Alysandratou Ιωάννα Αλυσανδράτου Chair of the Hellenic Community for Pulmonary Hypertension and President of the Alliance
PHA Europe, the European Pulmonary Hypertension Association, is offering training courses on Health Technology Assessment. (HTA) and Policy work. The first training session took place on June the 5th, 2024, and two more are scheduled before the end of the year: The speaker, Niels Bertelsen, is (volunteer) past chair of the Health Technology Assessment International
Transcript “CONGENITAL HEART DISEASE AND PULMONARY HYPERTENSION”, MAY 18, 2024 NB. This transcript can be translated into your preferred language – use orange button at the bottom centre of this page to select it (slides are not translatable). DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage all visitors to consult with
The Global Allergy and Airways Patient Platform (GAAPP)’s mission is to globally support and empower patients with allergies, airways and atopic diseases by protecting their rights and insisting on the duties of governments, healthcare professionals and the general public. The organisation’s vision is to create a world where patients with allergies, airways and atopic diseases live
Anne-Marie Amilhat, who is one of the world’s longest-living heart-lung transplant recipients (36 years post surgery!) was among the 11,000 people who carried the Olympic flame from Athens to Paris. On May 17th Anne-Marie carried the torch between Toulouse and Auch. The news was reported in the April 2024 edition of the French pulmonary hypertension
Génération HTAP is a French association that supports children and families affected by pulmonary arterial hypertension. Their key activity is the creation and promotion of opportunities for children to meet, so they feel less alone in facing this illness. They announced the launch of the Generation HTAP website on social media on May 21, 2024,
Very busy month for the French pulmonary hypertension association HTaPFrance: a report on the April activities, of the election of the new Members of the Board and announcements for future activities. These include a golf tournament on May 24, the participation in the Course des héros on June 16, and the organisation of patient education
Program May 17, 2024 Welcome and Official Greetings Program May 18, 2024 See program in Greek here
Hellenic Community for Pulmonary Hypertension symposium on May 17-18 2024 Read Post »
Last year the Canadian Pulmonary Hypertension Association, PHA Canada, conducted a survey to explore the financial and employment impacts of pulmonary arterial hypertension in Canada. The aim of the research was to understand how this condition affects patients’ work and daily activities. The survey also captured information about patients’ need for caregivers and the impact
On Saturday the 4th of May 2024, a number of pulmonary hypertension patients and their relatives, friends and carers, from Switzerland and Germany joined the French group to celebrate World Pulmonary Hypertension Day together, as has been their custom since 2016. At the initiative of HTaPFrance, the French pulmonary hypertension association, the gathering was held
Today, on May 5, World Pulmonary Hypertension Day, the Alliance for Pulmonary Hypertension celebrates one year since the launch of the Pulmonary Hypertension Knowledge Sharing Platform! For those of you who have not yet had a chance to visit it, the Pulmonary Hypertension Knowledge Sharing Platform is: The Pulmonary Hypertension Knowledge Sharing Platform is an
Celebrating one year from the Pulmonary Hypertension Knowledge Sharing Platform launch! Read Post »
World Pulmonary Hypertension Day symbolizes the solidarity and unity of the community in facing this condition’s challenges. The members of the Alliance for Pulmonary Hypertension celebrate this day by emphasising the importance of sharing knowledge and best practices to empower patients, engage the scientific community, and foster collaboration in pulmonary hypertension care. This is the
Coming up on May 31st at 10 am CEST and not to be missed if you are part of the pulmonary hypertension community! The European Lung Foundation (ELF) Pulmonary Hypertension Patient Advisory Group was set up in 2023 and includes patients and patient advocates from a number of patient associations in Europe and in the
What does it feel like to carry out normal every day activities like ironing a shirt or sweeping the floor when you have pulmonary hypertension? The Asociación Nacional de Hipertensión Pulmonar ANHP will set up a booth on May 6, at the Hospital Universitario Puerta De Hierro Majadahonda, from 9:00 a.m. to 2:00 p.m., where visitors will be
The Pulmonary Hypertension Association‘s CEO Matt J. Granato shares the association’s plans to celebrate the 2024 World Pulmonary Hypertension Day and invites the global PH community to mark this longstanding and important awareness campaign around the theme of “unity”. Read more at this link on the PHA website
