The European Conference on Rare Disease is recognised globally as the largest, patient-led, rare disease policy-shaping event held in Europe. The 2024 edition will be held virtually and in person in Brussels, Belgium, from May 15 to 16. Read more about the conference at this link
European Conference on Rare Diseases (ECRD), Brussels, May 15-16, 2024 Read Post »
On May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in a global event to raise awareness of the disease. World pulmonary Hypertension Day was initiated by the Spanish pulmonary hypertension association ANHP. Many of the patient associations taking part in the celebrations organise sports events using the slogan
World Pulmonary Hypertension Day 2023, May 5 Read Post »
“This article is not freely available but there is a summary of the content where the author say that one of the most important triumphs of the current 2022 pulmonary hypertension guidelines is an overarching emphasis on multidisciplinary, collaborative and patient-centred care. Indeed, the guidelines were themselves authored, reviewed and endorsed by a broad range
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS, the European Organisation for Rare Diseases, and 65+ national alliance patient organisation partners. For the 2023 edition 600+ events were held worldwide in 106
International Rare Disease Day, February 29, 2024 Read Post »
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
RACE is a (completed) phase 3, multicentre, open-label, parallel-group, randomised controlled trial done in 23 French centres of expertise for pulmonary hypertension enrolling treatment-naive patients aged 18–80 years with newly diagnosed, inoperable chronic thromboembolic pulmonary hypertension and pulmonary vascular resistance of more than 320 dyn·s/cm5. A summary of the article is available on The Lancet
An edition of the the Council of Europe EDQM’s annual “Newsletter Transplant” was published. It provides comprehensive information and data on donation and transplantation activities in 2021 from 79 countries worldwide. This report is the international reference in monitoring practice in donation and transplantation of substances of human origin. It is produced thanks to the
Abstract Improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on the impact of the disease on their day-to-day activities and quality of life, and a holistic approach is coming to the front of pulmonary arterial hypertension
The authors of the study titled “Medications for the treatment of pulmonary arterial hypertension: a systematic review and network meta-analysis” conducted a search on MEDLINE, Embase, the Cochrane Central Register of Controlled Trials and Clinicaltrials.gov, from inception to December 2021, which yielded 5.006 records, of which the full texts of 222 records were reviewed and 53 randomised
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
Educational video about pulmonary hypertension shared by the Turkish pulmonary hypertension association PAHSSc. The video can be viewed on the PAHSSc YouTube channel at this link
What is chronic thromboembolic pulmonary hypertension? The President of PHASSc, the Turkish pulmonary hypertension association, interviews three medical experts for this educational video.
Educational video about chronic thromboembolic pulmonary hypertension by Prof. Dr. Bedrettin Yildizeli from the Marmara University in Turkey, shared by PAHSSc, the Turkish pulmonary hypertension patient association. The video che can be viewed on the PAHSSc YouTube channel at this link
Excellent educational video in French language about chronic thromboembolic pulmonary hypertension, developed by RespiFil. Discusses causes of chronic thromboembolic pulmonary hypertension, symptoms, diagnostic work up, treatments. Features interviews with French PH experts from the French Network of PH (Pulmotension) including Prof. Marc Humbert from the University Hospitals of Paris-Sud Bicêtre, Le Kremlin-Bicêtre (France), and a
The EURORDIS Summer School on Medicines Research & Development consists of a one week of face-to-face training, held in June in Barcelona. Free e-learning modules are also available on demand. The EURORDIS Summer School aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development.
400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global association® I’M AWARE THAT I’M RARE: THE PHAWARE® PODCAST is devoted to raising global awareness about pulmonary hypertension with dynamic stories from pulmonary hypertension patients, caregivers and medical professionals from around the world. Over 400 stories have been included in the podcast
Could you kindly tell us something about yourself? I am the Director of Membership Support at the Pulmonary Hypertension Association (PHA UK), where I have worked for the last ten years. As part of a small yet dynamic team, my role is to ensure the charity is supporting its membership in the best possible way.
