The winter 2023 edition of the UK Pulmonary Hypertension Association’s magazine “EmPHasis” is now available to all online!
Read the winter issue of “EmPHasis” at this link on the PHA UK website
Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!
The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal
“The added value of patient associations”, a publication by the European Patient Forum (EPF)
The European Patient Forum (EPF) published in 2017 a booklet titled “The Added Value of Patient Organizations”, which captures the crucial role of patient organizations in healthcare policy, capacity building, peer support, and research and development, as well as the challenges they face. This booklet highlights the significant impact these organizations have on shaping health
December 5 is International Volunteer Day! A wonderful opportunity to thank all those who have contributed to the development and launch of the Alliance for Pulmonary Hypertension!
Today marks International Volunteer Day! A wonderful opportunity to express our heartfelt gratitude to all those who have generously dedicated their time and energy to the establishment and launch of the Alliance for Pulmonary Hypertension and its knowledge-sharing initiative! 🔹 The AfPH President Ioanna Alysandratou Ιωάννα Αλυσανδράτου, and Board Members Luc MATTHYSEN (Secretary) and Hans-Dieter Kulla (Treasurer) 🔹 The AfPH
A report of the Dutch Pulmonary Hypertension Association’s very successful “Information Day”, held on November 11, 2023, on the theme: “20 Years Moving Forward”
On the 11th of November the Dutch Pulmonary Hypertension Association held a remarkably successful Information Day on pulmonary hypertension, with the central theme being “20 years moving forward.” The auditorium was filled to the last seat, with 160 participants. The day started with the opening remarks by the Chair, Ms Miriam Kap, a nurse specialist
Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials
The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical
“Patient partnership in cardiovascular clinical trials”, European Heart Journal
This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development
“Patient partnership in cardiovascular clinical trials”, European Heart Journal Read Post »
New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!
The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as
Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!
“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D
An awareness campaign by the European Society for Organ Transplantation (ESOT) provides valuable resources to empower patients and enhance their pre and post-transplant journey, August 21, 2023
The awareness campaign by ESOT – European Society for Organ Transplantation is very relevant to our community as, despite the huge progresses made in the past 30 years in the field of pulmonary hypertension (new treatments, better treatment management, new/improved surgical techniques, etc), lung transplantation still remains an important treatment option for patients who do
Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate!
📣 Yesterday, August 14 2023, the The Lancet published a ground-breaking three-paper series on pulmonary hypertension. 1️⃣ In the first paper, Prof. Marc Humbert and colleagues provide an overview of the pathophysiology of pulmonary arterial hypertension, current therapeutic approaches, and emerging treatment options, with a forward-looking discussion of innovative solutions for future clinical trials. We
Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh
Gergely Meszaros, a pulmonary hypertension advocate and Project Manager at the European Reference Network for Rare Lung Diseases, ERN-LUNG, was invited to speak at the Association of Cardiovascular Nursing & Allied Professions (ACNAP) of the European Society of Cardiology Annual Congress in Edinburgh, UK, on June 23-24, 2023. Gergely’s talk was about the 2022 joint European Society
Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023
Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at
Connecting and empowering the pulmonary hypertension community through newsletter exchange
As dedicated volunteers for our pulmonary hypertension patient associations, we understand the immense effort involved in crafting a newsletter. It goes beyond just creating content, which requires extensive research and writing, but also involves sourcing the right photos, designing an attractive layout, printing, and distribution. Newsletters serve as a fantastic way to stay connected with
Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation”
A recent study published in Pulmonary Circulation demonstrated the effectiveness of a newly developed video e-learning tool in improving nutrition and quality of life for pulmonary arterial hypertension (PAH) patients. Conducted at a single center in Amsterdam, the study found that the use of e-learning modules on nutrition offered a unique opportunity to positively influence
Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available
“PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP. TRANSCRIPT DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage
The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST
Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be
The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network
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)
The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”
Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life
On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023
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