Four Pillars of Progress: the Belgian Pulmonary Hypertension Association PH Belgium – Pulmonale Hypertensie vzw’s Journey Through 2024

This year, the Belgian Flemish Pulmonary Hypertension Association, PH Belgium – Pulmonale Hypertensie vzw, worked on four main pillars: education, advocacy, peer support, and support for scientific research. It was an exciting year, filled with interesting discussions, inspiring collaborations, and meaningful connections with peers! 1.1 Education Working Together on Better Education about Pulmonary Hypertension (PH-PIP […]

Four Pillars of Progress: the Belgian Pulmonary Hypertension Association PH Belgium – Pulmonale Hypertensie vzw’s Journey Through 2024 Read Post »

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025”

Looking back on the year 2024, PHAWARE’s founder Steve Van Wormer reflects on an extraordinary year of milestones that exemplify the association’s dedication to raising awareness and fostering innovation for the pulmonary hypertension community. Among the notable achievements: the successful launch of a groundbreaking new app, the remarkable milestone of 500 episodes of the inspiring

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025” Read Post »

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones

The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants!

The Alliance for Pulmonary Hypertension (AfPH) recently concluded its 14th webinar, marking the culmination of an educational initiative that began in June 2023. These virtual gatherings brought together internationally renowned experts in pulmonary hypertension, who shared their expertise on a comprehensive range of topics crucial to advancing patient care and quality of life. The diverse

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants! Read Post »

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks

The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks Read Post »

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS)

Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe,

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS) Read Post »

The UK Pulmonary Association’s “Listening Line” support service provides dedicated time to talk through worries or concerns about emotional or mental wellbeing

The “Listening Line” is a free, confidential supportive call service is available to all members of the UK Pulmonary Hypertension Association, PHA UK, their family and friends. It is operated by experienced PHA UK staff, who are retired from the National Health Service (NHS). They are skilled and patient listeners, with many years of experience

The UK Pulmonary Association’s “Listening Line” support service provides dedicated time to talk through worries or concerns about emotional or mental wellbeing Read Post »

National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope

On Saturday, November 23, 2024, the Dutch National Pulmonary Hypertension Information Day brought together patients, caregivers, and medical professionals for an inspiring and informative symposium. This annual event, designed specifically for pulmonary hypertension patients and their loved ones, offered a full day of learning, connection, and support. The event was expertly chaired by Dr. Sanne

National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope Read Post »

Knowledge, Support, and Hope: a report of the 2024 Patient Conference organised by the German Pulmonary Hypertension Association ph e.v.

The German Pulmonary Hypertension (PH) Association ph e.v. hosted a comprehensive two-day patient conference in Frankfurt, designed to provide education, support, and networking opportunities for individuals affected by pulmonary hypertension. The conference, held on October 25-26, 2024, offered a rich and diverse program that addressed multiple aspects of living with pulmonary hypertension. The first day

Knowledge, Support, and Hope: a report of the 2024 Patient Conference organised by the German Pulmonary Hypertension Association ph e.v. Read Post »

Starting today, December 6, 2024, the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru

The Sociedad Latina de Hipertensión Pulmonar SLHP, the Colegio Médico del Perú Región Lima and the pulmonary hypertension patient association “Llapan Kallpa”, are inviting to the ,The International Symposium on Pulmonary Hypertension and the 9th meeting of Latin American leaders being held on 6-7 December, with the participation of esteemed professionals including Dr. Pilar Escribano,

Starting today, December 6, 2024, the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru Read Post »

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK.

Developed by psychologists, and supported by the Pulmonary Hypertension Association UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT) to help you change your thinking habits and behaviours. You can work through them in your own time and in your own home. The programme has been tested with

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK. Read Post »

Video-recordings of all the presentations from the PHA Europe Annual PH Conference, which took place on November 6-10, 2024, now available on the Bel Air Center platform

The videos of the presentations and recorded sessions from the PHA Europe Annual Pulmonary Hypertension European Conference (APHEC) 2024, held in Castelldefels, Barcelona, Spain, are now available on the Bel Air Center platform. 1. Prof. Ardeschir Ghofrani: Current and future pulmonary hypertension treatments 2. Prof. Polona Mlakar: Chronic thromboembolic pulmonary hypertension (CTEPH) 3. Prof. Mona

Video-recordings of all the presentations from the PHA Europe Annual PH Conference, which took place on November 6-10, 2024, now available on the Bel Air Center platform Read Post »

The American Lung Association and the US Pulmonary Hypertension Association (PHA) partner to develop a tool to help a primary care physicians to recognise pulmonary hypertension earlier

Early diagnosis can save lives. To improve care for those living with pulmonary hypertension, the US pulmonary hypertension association, the PHA, and the American Lung Association have developed a “Guidance to the Guidelines,” a tool to help health care providers recognize pulmonary hypertension symptoms sooner and refer patients to specialists. This resource aims to reduce

The American Lung Association and the US Pulmonary Hypertension Association (PHA) partner to develop a tool to help a primary care physicians to recognise pulmonary hypertension earlier Read Post »

AfPH Board Member Louise Bouman reporting from the Annual PH Conference (APHEC) organised by PHA Europe in Barcelona

Quote from Louise’s article for the Dutch PH Association From November 6 to 10, 2024, it was time to the Annual General Meeting and Conference of PHA Europe. More than 70 delegates from 42 national organizations representing 37 countries participated. The Netherlands was represented by Korrie de Koning and Louise Bouman, secretary and chair of

AfPH Board Member Louise Bouman reporting from the Annual PH Conference (APHEC) organised by PHA Europe in Barcelona Read Post »

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages!

The Pulmonary Vascular Research Institute (PVRI) organised a patient-directed webinar on “Debunking Myths of Lung Transplantation” on September 25, 2024. This was an outstanding webinar: the explanations were exceptionally clear and delivered in easy-to-understand language, covering every step of the transplant journey—from getting listed and preparing for surgery, through the operation and immediate post-op, to

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages! Read Post »

November is “Pulmonary Hypertension Awareness Month”, an annual observance established by the Pulmonary Hypertension Association USA (PHA)

November the 1st marks the beginning of Pulmonary Hypertension Awareness month, an initiative of the Pulmonary Hypertension Association (PHA). This year’s theme, “Let Your Light Shine,” celebrates the dedication of the pulmonary hypertension community in raising awareness, advocating for improved care, and supporting those with pulmonary hypertension through advocacy, volunteering, fundraising, and education. The Pulmonary

November is “Pulmonary Hypertension Awareness Month”, an annual observance established by the Pulmonary Hypertension Association USA (PHA) Read Post »

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024

As both a nurse and Chair of the Pulmonary Hypertension Association UK, Dr. Iain Armstrong is passionate about doing the right thing for patients. Compassion, he believes, lies at the heart of nursing and excellence in healthcare. Compassion, derived from the Latin “compassion” meaning “to suffer together,” is a vital strength that enables nurses to

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024 Read Post »

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA

Between 0.5% and 5% of people who experience a pulmonary embolism (a blood clot) later develop chronic thromboembolic pulmonary hypertension (CTEPH). Learn more about pulmonary embolism and the risk for chronic thromboembolic pulmonary hypertension in the free Pulmonary Hypertension Association USA brochure titled “What You Need to Know After a Pulmonary Embolism” available at this

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA Read Post »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public Read Post »

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