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
Ioanna Alysandratou, a pulmonary hypertension patient and President of Hellenic PH,, is the creator of Pongo, the “rare” purple elephant. Pongo has only a tiny little nostril and struggles to breathe. This is one of the symptoms of pulmonary hypertension, a rare condition affecting the lungs and heart. Pongo has been used in many awareness
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.
The EURORDIS-EFPIA Joint Statement on proposals to improve patient access to medicines was published on June 15 2022. As the EURORDIS-EFPIA press release reads “This is the first time that EURORDIS-Rare Diseases Europe, as a patient organisation, has come together with the pharmaceutical industry’s European organisation in such a structured dialogue. Discussions focused on how
On June 9th 2022, patient engagement experts at admedicum organized a live event in collaboration with HollandBIO and INSMED Pharmaceuticals, Inc. in Utrecht, with over 70 attendees and distinguished speakers from patient organisations, healthcare, regulatory and industry. The theme was “Patient engagement in 2030: how can patient engagement contribute towards building a new ecosystem for
Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor. The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live
Would you kindly give us some information about yourself? My name is Aryeh Copperman, I am the CEO since 2005 of Isreal’s pulmonary hypertension association. I have a BA in Accounting and information systems, and Masters Degree in Public Health, from the Hebrew University in Jerusalem. I am married with 4 children. My wife has
An educational ideo developed by phaware about chronic thromboembolic pulmonary hypertension. The video can be view at this link on the phaware website
PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of
To date, several reports have underlined low rates of antibody response to mRNA COVID-19 vaccines in solid organ transplant (SOT) recipients. According to the authors of an article titled “Evaluation of the Kinetics of Antibody Response to COVID-19 Vaccine in Solid Organ Transplant Recipients: The Prospective Multicenter ORCHESTRA Cohort” (1) previous studies assessing the antibody
I’m B J-N , 42 years old living with my significant other. We don’t have any children. In my childhood and youth I was always very sporty and active. I’m into athletics, children’s gymnastics and finally even competitive gymnastics. I started horseback riding when I was 13. But even then I was always more susceptible
My life with pulmonary arterial hypertension and rheumatism, a patient story Read Post »
The PAH Initiative was established by United Therapeutics with the aim of providing knowledge and inspiration based on science and research in pulmonary arterial hypertension today. Here you can find interesting information on pulmonary arterial hypertension, treatments and life style advice as well as patient testimonials. The “Learning Library” section of the PAH initiative contains useful
