“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 »

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc)

Prof. Serpil Erzurum is Cleveland Clinic’s Chief Research and Academic Officer and Chair of the Lerner Research Institute. Dr. Erzurum has won numerous awards, has published more than 300 articles, and is among the top 1% cited researchers in the world. This interview was originally published in English on Nefes, the magazine of the Turkish

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc) 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 »

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc

Prof. Lewis J. Rubin with Kamil Hamidullah, immediate past President of the PAHSSc This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc in December 2021.Our sincerest thanks go to our friends and colleagues at the PAHSSc for graciously allowing us to republish this interview and share with

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc Read Post »

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc

This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, in June 2022. We extend our sincerest thanks to our friends and colleagues at the PAHSSc for graciously permitting us to republish and share it with the wider pulmonary hypertension community. Professor Maurice Beghetti is Head of

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc Read Post »

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc

Photo: Prof. Sean Gaine with Kamil Hamidullah, immediate Past President of PAHSSc, the Turkish Pulmonary Hypertension Association. This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, on the March 2023 edition. Our sincerest thanks go to the PAHSSc for very generously sharing this interview with the

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc 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 »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 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 »

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