Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for […]

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024

An article titled “Empowering patient research” which was recently published on the Aeon Psyche newsletter on August 5, 2024, discusses the challenges faced by patients with chronic illnesses and disabilities in the healthcare system, particularly in research and academia. The article advocates for the inclusion of patients as active participants in medical research, arguing that

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024 Read Post »

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor

Chloe Temtchine is an award-winning singer, songwriter, speaker, and the creator of “Super Brave,” an interview series that features both kids and adults who are living with a chronic illness. Her dedication to the cause includes “The Chloe Temtchine Foundation” (TCTF) which supports those living with pulmonary arterial hypertension and other serious conditions. Through TCTF,

Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor Read Post »

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024

A study titled “Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals” was published on BMC Education on May 10, 2024. Medical education programs are increasingly including presentations by individuals with lived experiences. The authors of the article say that relying on a limited number of speakers may

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024 Read Post »

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 »

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024

Dr. Joanna Pepke-Zaba, renowned consultant respiratory physician at Royal Papworth Hospital, recently received a prestigious European Respiratory Society (ERS) lifetime achievement award, marking another milestone in her illustrious career. In an interview with Saša Janković, recently published on March 18, 2024 on “Hospital Health Care Europe”, Dr. Pepke-Zaba discusses her dedication to advancing research and

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024 Read Post »

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024 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 »

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension

“Pongo” serves as the mascot of the Greek Pulmonary Hypertension Association. This elephant doll features a unique characteristic: a minuscule nostril that impedes its ability to breathe adequately, leading to its striking purple hue caused by oxygen deprivation. It was create to educate children to recognize a physical diversity that may not always be visible.

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension Read Post »

“Guide to developing a Patient Journey”, a structured approach to understand the natural progression of rare diseases and identify unmet needs, EURORDIS, European Rare Disease Organisation, March 2024

The “Guide to developing a Patient Journey”, published in Mars 2024 by EURORDIS, the European Rare Disease Organisation, provides step-by-step instructions, practical tips, and tools to aid patient representatives in developing Patient Journeys for their respective rare conditions. What are Patient Journeys? Patient Journeys represent an innovative approach aimed at understanding the natural progression of

“Guide to developing a Patient Journey”, a structured approach to understand the natural progression of rare diseases and identify unmet needs, EURORDIS, European Rare Disease Organisation, March 2024 Read Post »

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems 

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. 24 ERNs are working on a range of thematic issues, including ERN-Lung, the European Reference Center for Rare Lung Diseases, which

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems  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 »

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari

It was a great honour to be invited to speak at the ERN-LUNG webinar on quality indicators for adult pulmonary arterial hypertension care, which took place on December 8, 2023, where I was asked to explain why these are important from a patient perspective. The webinar referenced an article in the European Journal of Heart

Why quality indicators for pulmonary hypertension care are important from a patient perspective, Pisana Ferrari Read Post »

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available

On December the 8th 2023 the European Reference Network for Rare Lung Diseases (ERN-Lung) hosted a webinar titled “Quality Indicators in Healthcare, the example of Pulmonary Hypertension”. The webinar refers to the scientific paper on quality indicators published in the European Journal of Heart Failure, in connection with the publication of the 2022 European Society

Recording of the December 8, 2023 ERN-LUNG webinar on quality Indicators for pulmonary arterial hypertension is available 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 »

Two part video series on Patient Reported Outcome Measures (PROMs): what they are and how to collect and use them, by Leem France

Les Entreprises du Médicament, Leem, is the French industry association which represents drug companies operating in France. During the course of November 2023 Leem organised a two-part video series on Patient Reported Outcome Measures. Round Table 1- 06/11/2023 – PROMs, PREMs, Patient Surveys: What are we talking about and for what purposes? Moderator: Dr. Thomas

Two part video series on Patient Reported Outcome Measures (PROMs): what they are and how to collect and use them, by Leem France Read Post »

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP)

The European Commission has launched a call for expressions of interest to represent patients’ organisations in European Medicines Agency’s (EMA) Committee for Orphan Medicinal Products (COMP). This is a very important opportunity for patients to have a role in the approval of orphan medicinal products! The call aims to fill three positions nominated by the

The European Medicines Agency (EMA) has issued a call for patient representatives to join the Committee for Orphan Medicinal Products (COMP) Read Post »

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023

The Directorate-General for Health and Food Safety of the European Commission has just issued a new booklet on European Reference Networks (ERNs). European Reference Networks are virtual networks connecting healthcare providers, professionals and patient organisations across the European Union (EU) and Norway. The rationale behind their establishment is that no country alone has the knowledge

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023 Read Post »

The Impact and Future of European Reference Networks (ERNs) discussed at a conference in Bilbao, Spain, on October 10-11, 2023

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 EU

The Impact and Future of European Reference Networks (ERNs) discussed at a conference in Bilbao, Spain, on October 10-11, 2023 Read Post »

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