Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal

Aside from the commonly observed BMPR2 gene (bone morphogenetic protein receptor 2), there are several other genes, each falling into distinct functional categories, that have been identified as contributors to pulmonary arterial hypertension development. This has led both specialized and general healthcare providers to encounter various inquiries about the necessity, methods, and potential outcomes of […]

Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal Read Post »

“A Friendship Story” a resource for children with pulmonary arterial hypertension by Serbian patient and author Danijela Pešić, with illustrations by Ivan Drajzl

On the occasion of Rare Disease Day 2022 EURORDIS, the European Rare Disease Organisation, in collaboration with its national alliance rare disease patient organisation partners, put together a “School toolkit” to explain living with a rare disease to children and teenagers. These resources were translated in over 20 languages. One of these resources “A Friendship

“A Friendship Story” a resource for children with pulmonary arterial hypertension by Serbian patient and author Danijela Pešić, with illustrations by Ivan Drajzl Read Post »

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages

Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages Read Post »

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

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages! Read Post »

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school

This guide, recently published by the Canadian pulmonary hypertension association, PHA Canada, is designed as a tool to help teachers and school staff learn about pulmonary hypertension and fostering open communication and understanding. The Guide includes the following documents: Read more at this link on the PHA Canada website

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school Read Post »

The 2023 PHA Canada Research scholarship application process opens September 1, 2023!

PHA Canada’s scholarship program awards up to $10,000 to outstanding trainees in support of their research into the field of pulmonary hypertension. This research program allows emerging pulmonary hypertension researchers—whose projects will contribute to the better understanding or treatment of pulmonary hypertension—to fully delve into their scientific studies, in collaboration with specialized pulmonary hypertension clinics

The 2023 PHA Canada Research scholarship application process opens September 1, 2023! Read Post »

20 Latin American patient advocacy groups, including for pulmonary hypertension, are speaking at the most important scientific event of respiratory health in Latin America, “SAREAL”

The Respiratory Health, Allergy, and Atopy Summit (“SAREAL” as it reads its acronym in Spanish) brings together organizations working for chronic respiratory diseases (prevalent and rare), allergic, and atopic conditions to explore the underlying connection and commonalities. This year it is taking place on August 11 and 12 in Punta Cana, the Dominican Republic. It

20 Latin American patient advocacy groups, including for pulmonary hypertension, are speaking at the most important scientific event of respiratory health in Latin America, “SAREAL” Read Post »

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose

Migdalia Denis, leader of the Latin America Pulmonary Hypertension Association (Sociedad Latina de Hipertensión Pulmonar), was invited on May 18, 2018, to deliver a TEDx talk. Migdalia has recently sent us the link to her talk and asked us to share it on the PH-KSP, in the hope that her message may inspire others to

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose Read Post »

Launch of “Lez Zorganes”, a French TikTok cartoon video campaign to promote organ donation among young people

A 2023 survey by the French Agence de la Biomédecine (Agency for Biomedicine) has found that 79% of 16-24 year-olds felt uninformed about organ donation. To address this, a new digital campaign has been launched, targeting young people in a lighthearted and engaging manner to provide information about organ donation without the heaviness typically associated

Launch of “Lez Zorganes”, a French TikTok cartoon video campaign to promote organ donation among young people Read Post »

The Asociación Nacional de Hipertension Pulmónar, ANHP, is sharing engaging and uplifting posts daily on social media

We were drawn to some posts shared by the ANHP on LinkedIn to send positive messages to patients. It features: – Concise, engaging, and encouraging messages– Appealing, evocative, and fun visuals We have taken four of the posts as examples and here are the messages: We are going slow but we are moving forward (turtle)

The Asociación Nacional de Hipertension Pulmónar, ANHP, is sharing engaging and uplifting posts daily on social media Read Post »

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association

Coline, a 34-year-old French pulmonary arterial hypertension patient living in Paris, diagnosed seven years ago, shares her tips on how to “style” a pump for intravenous infusion and on how to talk about it to one’s colleagues. The video is available at this link on the YouTube channel of HTaPFrance.

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association Read Post »

The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project

The European Communication on Research Awareness Needs, the ECRAN project is an online platform that is available in five languages in addition to English (German, Italian, French, Polish, Spanish), which contains a wealth of information about clinical trials, and explains everything patients need to know in order to take part in them. Rea more on

The basics of clinical trials and patient participation in an online platform developed by the EU-financed ECRAN project 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 »

The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 2023 

Warmest congratulations to PHA Canada for its 15th anniversary! Check out their anniversary video on YouTube In English at this link in French at this link PHA Canada’s National PH Community Conference is coming up soon, on June 9-10, in Ottawa. Select conference sessions will be made available via Zoom. Here is the link to

The Pulmonary Hypertension Association of Canada, PHA Canada, invites you to celebrate15 years of inspiration at this year’s National Community Conference, June 9-10, 2023  Read Post »

HTaPFrance, the French pulmonary hypertension association is taking part in a run in Lyon to raise funds for a booklet for teachers to facilitate the inclusion of children with pulmonary hypertension in school – June 25, 2023

Thanks to the enthusiasm of one of its members, HTaPFrance will participate in the Lyon Heroes’ Race (Course des Héros) taking place on Sunday June 25, 2023, in the Parc de Gerland in Lyon. Participants can either run or walk (8 km race, 5 km walk and 2 km discovery course). The aim is to

HTaPFrance, the French pulmonary hypertension association is taking part in a run in Lyon to raise funds for a booklet for teachers to facilitate the inclusion of children with pulmonary hypertension in school – June 25, 2023 Read Post »

PHantasticals, an initiative to increase awareness of pulmonary hypertension among patients, caregivers and the general public, unveils its new website on World Pulmonary Hypertension Day 2023, May 5

PHantasticals is an awareness raising initiative promoted by Ferrer. It is addressed to patients, caregivers and society large. The website features testimonials from patients and health care professionals as well as useful infographics on pulmonary hypertension (PH), pulmonary arterial hypertension (PAH), and pulmonary hypertension due to Interstitial Lung Disease (PH-ILD) Learn more on the PHantasticals

PHantasticals, an initiative to increase awareness of pulmonary hypertension among patients, caregivers and the general public, unveils its new website on World Pulmonary Hypertension Day 2023, May 5 Read Post »

Information resources on chronic thromboembolic pulmonary hypertension (CTEPH) by the Pulmonary Hypertension Association of Canada, PHA Canada

Chronic thromboembolic pulmonary hypertension (CTEPH) is one of the two rare forms of pulmonary hypertension. It is the result of multiple or recurrent blood clots in the lungs. It is within Group 4 of the current official pulmonary hypertension classification. Learn more about CTEPH at this link on the PHA Canada website

Information resources on chronic thromboembolic pulmonary hypertension (CTEPH) by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

Information resource for newly diagnosed pulmonary hypertension patients and their caregivers, by the Pulmonary Hypertension Association of Canada, PHA Canada

A diagnosis of pulmonary hypertension is life-changing and can significantly impact all aspects of a person’s life. This resource, developed by the Pulmonary Hypertension Association Canada, PHA Canada, provides answers to a few frequently asked questions to help patients get started on their journey. Download the resource at this link on the PHA Canada website

Information resource for newly diagnosed pulmonary hypertension patients and their caregivers, by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

How does pulmonary arterial hypertension affect the heart and lungs? A fact sheet developed by the Pulmonary Hypertension Association of Canada, PHA Canada

This resource, developed by the Pulmonary Hypertension Association Canada, PHA Canada, provides a simple explanation, and features great visuals, of the pulmonary circulation mechanism and how pulmonary arterial hypertension affects the heart and lungs. Download the fact sheet at this link

How does pulmonary arterial hypertension affect the heart and lungs? A fact sheet developed by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

TRANSLATE »
Scroll to Top