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 »

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right”

April 7 is the UN “World Health Day”. This date marks the anniversary of the founding of World Health Organization in 1948. Health is a human right: everyone, everywhere, should have access to quality health services. This year’s theme was chosen to champion the right of everyone, everywhere to have access to quality health services, education, and

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right” Read Post »

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages

The full transcripts of the Alliance for Pulmonary Hypertension’s 2023 six webinars are now available! The transcripts encapsulate invaluable insights that continue to resonate with current trends and emerging issues, serving as a vital resource for our community. They are now in a format that can be translated into 40 languages, thanks to the embedded

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages 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 »

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online

Prof. Adam Torbicki’s presentation is titled “Access to care for pulmonary arterial hypertension and chronic thromboembolic pulmponary hypertension”. It can be viewed at this link on Vimeo (you need to register on Vimeo to see it) Prof. Jean-Luc Vachiéry’s presentation is titled “Drug development and clinical trials“. It can be viewed at this link on

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online 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 »

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 »

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 »

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023

The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023 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 »

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023

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,

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023 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 »

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred

On Wednesday April 26, 2023, the European Commission adopted a proposal for a new Directive and a new Regulation, which revise and replace the existing general pharmaceutical legislation. The EU Commission’s proposed revisions include proposals to update the EU’s Regulations on Orphan Medicinal Products and Paediatric Medicines, which are very important to Europe’s population of

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred Read Post »

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care.

The PVRI survey is addressed at health care professionals to identify gaps and challenges that limit access to quality professional clinical care for patients with pulmonary hypertension. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of pulmonary vascular diseases. The survey results

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care. 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 »

“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022

In a recent article for the European Public Health Alliance (EPHA) website guest authors Devi Mey, CEO, and Luciano Potena, President, of the European Society for Organ Transplant (ESOT), point out that gender, socioeconomic status, ethnicity, place of residence, level of health literacy, patient awareness, and inadequate training of healthcare providers (HCP) all exert a

“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022 Read Post »