Last week around 20 entries were posted on the platform, the more topical ones in the “News” section, and those who serve as useful background info in the relevant sections of the PH-KSP. Many thanks to the patient associations and other organisations who shared news about their activities and to our volunteer content creation/curation team. […]
A selection of the PH-KSP’s Entries from May 22-28, 2023 Read Post »
Patients can join the Pulmonary Hypertension Association Australia (PHAA) Facebook support group at this link
Pulmonary Hypertension Association Australia (PHAA) Facebook support group Read Post »
A recent article in Drug Topics, reports on the findings of a study presented at the 2023 American Thoracic Society International Conference, held from May 19 to 24 in Washington, DC, which reveals that the majority of patients with pulmonary arterial hypertension (PAH) live in an area that has a shortage of health care professionals,
From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of
Zambon, a multinational pharmaceutical company, announced today that it has completed enrollment in its two pivotal Phase 3 studies. The trials are designed to evaluate the safety and efficacy of Liposomal Cyclosporine A for Inhalation (L-CsA-i) for the treatment of BOS in adults following single lung (BOSTON-1) or double lung (BOSTON-2) transplantation. BOS is a
PHA UK’s is the first survey ever conducted about pulmonary hypertension and nutrition in the UK. As part of PHA UK’s work to help people enjoy a better quality of life with pulmonary hypertension, they would like to explore more about the role of nutrition and the difference it can make in this disease area.
Menopause is something that 50% of the population will experience at some point in their life, but it isn’t talked about enough. The PHA UK takes a closer look at menopause, and how it affects women with pulmonary hypertension. Read more at this link on the PHA UK phocusonlifestyle.org web page Four patients have shared
We are delighted to announce that the Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network, which includes more than 200 respiratory organisations across Europe and beyond, working together with people living with over 40 different lung conditions, including pulmonary hypertension. The European Lung Foundation (ELF)
This is a phase 3, randomized, double-blind, placebo-controlled study to evaluate sotatercept when added to background pulmonary arterial hypertension therapy in newly diagnosed intermediate- or high risk pulmonary arterial hypertension participants. The estimated enrolment is participants is 662 and the estimated completion date is August 31, 2028. The sponsor is Acceleron Pharma, Inc., a wholly-owned
European Mental Health Week is a pan-European initiative that aims to raise awareness about the importance of mental health in our everyday lives. Set up and run by Europe’s largest independent mental health NGO Mental Health Europe (MHE), the fourth edition will take place from 22 May until 28 May 2023. Pulmonary hypertension has a significant impact on the lives
The European Communication on Research Awareness Needs, the ECRAN project is an online platform that is available in five languages in addition to English (German, Italian, French, Polish, Spanish), which contains a wealth of information about clinical trials, and explains everything patients need to know in order to take part in them. Rea more on
Check the video out on the PHA UK’s YouTube channel at this link
The PHA UK’s website features a page dedicated to frequently asked questions by the newly diagnosed with pulmonary arterial hypertension, including: how to explain to people, in a simple way, what it is, what comes after diagnosis, what the currently available treatments are and what the general outlook for people with pulmonary hypertension is. The
The International Clinical Trials Day is organised yearly on May 20, since 2014, by the Association of Clinical Research Professionals (ACRP), as an opportunity for the clinical research community to to celebrate what has been accomplished in this field and recommit to push even further. Learn more about International Clinical Trials Day at this link
The UK Pulmonary Hypertension Association, PHA UK, regularly provides information to patients about possible benefits they can apply for. Today on Instagram the PHA UK published information about grants for driving licences awarded via the Motability Scheme. Being able to drive is an important way for patients to be autonomous and this is a very
Driving license grants for pulmonary hypertension patients in the UK Read Post »
Pulmonary endarterectomy (PEA) is the recommended first-line treatment for patients with chronic thromboembolic pulmonary hypertension (CTEPH), if they qualify for the procedure. Alternative therapies include balloon pulmonary angioplasty (BPA) or medical therapy. An article by Jared Kaltwasser for the American Journal of Managed Care, dated April 17, 2023, presents the results of a Swedish single
The authors of the study titled “Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, published in Advances in Pulmonary Hypertension, on March 16, 2022. Parents and caregivers of over 300 patients from a large paediatric pulmonary hypertension center were approached for participation in the survey, which was administered online and on
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
The aim of this study was to investigate the value given by patients’ and caregivers’ to components of composite outcomes in pulmonary arterial hypertension (PAH) clinical trials. There were 335 participants, of which 257 were patients with pulmonary arterial hypertension. The study findings revealed that most outcomes were considered of major or mild-to-moderate importance to
As not everyone is comfortable talking on the phone the PHA UK has set up an e-support online service to assist with emotional wellbeing, practical queries and problem-solving, signposting and connections. Contact the PHA UK at support@phauk.org
