International chronic thromboembolic pulmonary hypertension (CTEPH) Conference 2023, September 29-30, 2023
Learn more at this link
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
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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
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Amsterdam UMC Lung Congress on Pulmonary Hypertension, March 16-17, 2023
A two day event organised by the Netherlands Respiratory Society entirely dedicated to pulmonary hypertension, featuring some of the key international medical experts in the field as speakers. In response to the new pulmonary hypertension guidelines published in the Fall of 2022 by the European Society of Cardiology (ESC) and European Respiratory Society (ERS), the
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Drug-induced Pulmonary Hypertension Symposium: Applying Lessons Learned from The Aminorex Epidemic, April 13-14, 2023
The Drug-induced Pulmonary Hypertension Symposium is taking place in hybrid form (virtual and at Stanford University The rationale for this symposium is to leverage subject-matter expertise from international academic centers and Stanford University, engage the broader academic communities, global organizations (World Health Organization, United States Food and Drug Administration, European Medicines Agency), and stake-holders (patients,
4th Baltic Pulmonary Hypertension and Circulation Conference, April 21, 2023
The 4th Baltic Pulmonary Hypertension and Circulation Conference took place in Riga, Latvia on April 21, 2023. It provided an opportunity to hear about the latest developments in the treatment of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension from international experts – Prof. Marcin Kurzyna from Poland and Prof. Olivier Sitbon from France, as well as leading experts
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Mapping the main stakeholders in pulmonary hypertension care, a brief summary by Pisana Ferrari
The main stakeholders in pulmonary hypertension care, a brief summary Author: Pisana Ferrari Last updated December 13, 2024 The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the
“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023
An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be
Caring for a child with pulmonary hypertension, useful information and resources from the Pulmonary Hypertension Association (PHA)
An entire section of the Pulmonary Hypertension Association (PHA) website is dedicated to parenting a child with pulmonary hypertension. It provides invaluable advice and resources on different aspects of pulmonary hypertension child care including: Learn more on the dedicated page of the PHA website at this link
SALTO Research Study for Children and Adolescents with pulmonary arterial hypertension
Learn more about a research study of an investigational medication for children ages 2 to <18 with pulmonary arterial hypertension on the SALTO research study website at this link
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Medication and pulmonary hypertension, a Pulmonary Hypertension Association UK (PHA UK) booklet
This booklet was developed by the Pulmonary Hypertension Association UK (PHA UK) as a guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies, including those taken orally, intravenously or via a nebuliser. This booklet is regularly reviewed to keep the information as up-to-date
PHA Canada’s “PH Buddy program”, was developed during the COVID-19 pandemic to help patients stay safe and socially connected in uncertain times
“Staying connected to others in your community — even while practicing social/physical distancing — is an important part of staying well”. This is the rationale behind PHA Canada‘s “PH Buddy program”. Find out more about the program and sign up to become a “PH Buddy” by visiting PHA Canada’s dedicated website page at this link
The Pulmonary Hypertension Association (PHA)’s “Email PHriends” initiative offers patients, caregivers and parents support with a caring and knowledgeable member of the community
The Pulmonary Hypertension Association (PHA)’s “Email PHriends” are volunteer patients and caregivers who are available to answer questions and chat through email with other members of the pulmonary hypertension community over a period of three months. The PHA specifies that the “Email PHriends” cannot offer medical advice but can share what they’ve learned along the
Pulmonary hypertension and children, a resource developed by the Pulmonary Hypertension Association UK (PHA UK)
This Pulmonary Hypertension Association UK (PHA UK) booklet on paediatric pulmonary hypertension was published with the help of experts in paediatric PH and families living with the condition It aims to help you understand more about pulmonary hypertension and the care and support available. You can order a copy by going to the PHA UK’s
“Overcoming Worry & Anxiety”, a free self help programme developed by the Pulmonary Hypertension Association UK (PHA UK)
This free four-week self-help programme, developed by Pulmonary Hypertension Association UK (PHA UK),consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help take control of problematic worry and anxiety. The programme has been developed with a team of clinical psychologists specifically for people with pulmonary hypertension, and has been tried and
Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)
With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey
Study evaluating a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension
The PAHcare™ medical device being assessed in this clinical investigation has been approved in Europe as a Class I investigation medical device as per Medical Devices Directive (93/42/EEC) for its use by pulmonary arterial hypertension patients (26 March 2021, reference number 1291298). The authors say this is the first study that will examine the effects
European Conference on Rare Diseases (ECRD), Brussels, May 15-16, 2024
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
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World Pulmonary Hypertension Day 2023, May 5
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
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“The new 2022 pulmonary hypertension guidelines: some small steps and some giant leaps forward for evidence-based care”, ERS Journal
“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