Archive – PULMONARY HYPERTENSION

The Asociación Nacional de Hipertensión Pulmonar ANHP, Spain, marks World Pulmonary Hypertension Day with an activity offering firsthand experience of the challenges of living with the condition

What does it feel like to carry out normal every day activities like ironing a shirt or sweeping the floor when you have pulmonary hypertension? The Asociación Nacional de Hipertensión Pulmonar ANHP will set up a booth on May 6, at the Hospital Universitario Puerta De Hierro Majadahonda, from 9:00 a.m. to 2:00 p.m., where visitors will be […]

The Asociación Nacional de Hipertensión Pulmonar ANHP, Spain, marks World Pulmonary Hypertension Day with an activity offering firsthand experience of the challenges of living with the condition Read Post »

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw

In today’s healthcare landscape, the patient’s perspective holds increasing sway in pivotal decision-making processes across various sectors, including governmental agencies, healthcare institutions, insurance entities, and corporate entities. As the importance of incorporating patient feedback grows, initiatives aimed at equipping patients with a deeper understanding of these processes and objectives become paramount. Recognizing this need the

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw Read Post »

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar

This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension. One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar Read Post »

Ieva Plume Receives Prestigious Ombudsman Award for Advocacy in Support of People with Disabilities of the Republic of Latvia

In a ceremony held on December 5, 2023, Ieva Plume, Chairperson of the Latvian Pulmonary Hypertension Association and Board member at the Latvian Alliance of Rare Diseases, was honoured with the Annual Award for Supporting People with Disabilities by the Ombudsman of the Republic of Latvia. This distinguished accolade was presented in the category of

Ieva Plume Receives Prestigious Ombudsman Award for Advocacy in Support of People with Disabilities of the Republic of Latvia Read Post »

“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

“The added value of patient associations”, a publication by the European Patient Forum (EPF) Read Post »

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023

In the age of artificial intelligence, chat bots and automated services, our quest for empathy becomes more pressing than ever. Counterintuitively, Dr. Eric J. Topal, an American cardiologist, scientist, and best selling author, claims that artificial intelligence has the potential to enhance empathy, particularly in the vital relationship between patients and clinicians. In a recent

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023 Read Post »

How the European Society of Cardiology (ESC) Patient Forum is contributing to shaping cardiovascular care and clinical guideline development

A recent article, titled “The essential role of patients in advocacy and policy”, published in the European Heart Journal on July 21, 2023, describes the activities of the European Society of Cardiology (ESC) Patient Forum and how it is empowering patients in shaping cardiovascular care. The European Society of Cardiology established the “ESC Patient Forum”

How the European Society of Cardiology (ESC) Patient Forum is contributing to shaping cardiovascular care and clinical guideline development 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

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! Read Post »

Proud that the Alliance for Pulmonary Hypertension has been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics!

We are proud to have been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics’ #RAREis program, which recognizes contributions to advancing, educating and addressing the needs of the rare disease community. We look forward to continuing to make a meaningful difference for those affected by pulmonary hypertension! The 2023 #RAREis Global Advocate Grant program was announced in February 2023

Proud that the Alliance for Pulmonary Hypertension has been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics! Read Post »

“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023

Eve Glasberg is the Director of Arts and Culture Communications at Columbia University, NY, NY. In a recent article for the Columbia University News, she writes about the growing field of “narrative medicine”, a discipline which is at the intersection of humanities, the arts, clinical practice, and health care justice, and aims to improve clinician-patient

“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023 Read Post »

Narrative medicine: a medicine infused with respect for the narrative dimensions of illness and caregiving, Rita Charon

Rita Charon, MD, PhD, is widely recognised as the originator of the field of “Narrative Medicine”. “The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others,” Charon wrote in a 2001 article titled “Narrative Medicine: A Model for Empathy, Reflection,

Narrative medicine: a medicine infused with respect for the narrative dimensions of illness and caregiving, Rita Charon Read Post »

The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements

Sharing from the PHA’s Instagram page the news that that the “Safe Step Act” is moving to the US Senate floor for the first time and aims to limit step-therapy requirements. Current insurance policies in US require people to try less expensive treatments than what their doctors prescribe first. The PHA points out that for

The US Pulmonary Hypertension Association, PHA, calls on the community to support legislation that would limit step-therapy requirements Read Post »

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 AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST Read Post »

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

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” Read Post »

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics

In the abstract to this very interesting article titled “What’s the Role of Time in Shared Decision Making?”, the authors point out that while shared decision making (SDM) is a desirable process and outcome of patient-clinician relationships, time is often insufficient and represents a barrier to SDM. The authors explore alternative ways clinicians can think

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics Read Post »

“Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, Pulmonary Circulation

Patient–health care provider (HCP) communication has long been identified as playing an essential role in medical care, say the authors of an article titled “Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, published in Pulmonary Hypertension. The objective of this study was to determine the words and phrases

“Improving communication between healthcare providers and pulmonary arterial hypertension patients: a survey of patient preferences”, Pulmonary Circulation Read Post »

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy

The European Patients’ Forum (EPF), has recently launched a training course for young patient advocates, “Advocacy 101”. The EPF is an umbrella organisation of patient organisations across Europe and across disease-areas. “Advocacy 101” is a free-of-charge, tailored training course built to help gain a solid base of knowledge and understanding of patient advocacy. Some of the key questions

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy Read Post »

“Shared decision making, shared care” is one of its the five key domains chosen by the European Society for Organ Transplant (ESOT) for its 2023 Congress

The European Society for Organ Transplant (ESOT)’s 2023 Congress, taking place in Athens, Greece, from September 17-20, has dedicated one of its five key domains to “SHARED DECISION MAKING, SHARED CARE”. The domain description reads as follows: “The delivery of healthcare is rapidly shifting towards a value-based system, driven by patients. We will focus on

“Shared decision making, shared care” is one of its the five key domains chosen by the European Society for Organ Transplant (ESOT) for its 2023 Congress Read Post »

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona

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.

Dates for the European Rare Disease Organisation, EURORDIS, Summer School for Patient Advocates 2023 now announced: June 19-23, 2023, Barcelona Read Post »

“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022

As patients we are delighted to see that the importance and the added value of involving patients in health care decisions and policies is increasingly being recognised. In this very interesting article published on September 16, 2022, the authors note that the application of patient experience data to inform healthcare decisions is still an emerging

“Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients”, Springer, July 19, 2022 Read Post »