15,000 km, 177 Days, 5 countries, One Mission: Lukáš Jakovec Keeps Pedalling for our “Wheels of Hope” campaign for organ donation and transplant, April 6, 2026

Czech cyclist Lukáš Jakovec is now on day 177 of his extraordinary solo bike journey around Europe, having covered an impressive 15,290 kilometres along the coastline — by the longest route possible. Lukáš is no ordinary cyclist. A multi-talented Czech professional — chef, tennis coach, tournament referee and professional bowler — he embarked on the […]

15,000 km, 177 Days, 5 countries, One Mission: Lukáš Jakovec Keeps Pedalling for our “Wheels of Hope” campaign for organ donation and transplant, April 6, 2026 Read Post »

“The Aristotle Classes on Pulmonary Hypertension (PH) and Adult Congenital Heart Disease (ACHD)”, October 12, 2024, Thessaloniki, Greece

The President of the Greek patient association Hellenic Community for pulmonary hypertension and of the Alliance for Pulmonary Hypertension Ioanna Alysandratou Ιωάννα Αλυσανδράτου was invited to address the “Aristotele classes on pulmonary hypertension (PH) and congenital heart disease (CHD)” congress on the 12th of October 2024. Her participation is important as it brings the vital

“The Aristotle Classes on Pulmonary Hypertension (PH) and Adult Congenital Heart Disease (ACHD)”, October 12, 2024, Thessaloniki, Greece 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 »

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation

The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation 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 »

“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 »

“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension

A delightful children’s book titled “Casper – the Bear with Blue Lips” debuted on September 30, 2023, at 11:30 a.m. in Bulgaria’s literary club “Peroto” within the National Palace of Culture (NDK). Authored by Natalia Maeva, an accomplished journalist and (former) patient, President of the Bulgarian Society for Pulmonary Hypertension BSPPH, the book introduces young

“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension 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 »

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023

Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023 Read Post »

The Rare Purple Elephant “Pongo” and his role in raising awareness of pulmonary hypertension, an initiative by the Greek pulmonary hypertension association Hellenic PH

Ioanna Alysandratou, a pulmonary hypertension patient and President of Hellenic PH,, is the creator of Pongo, the “rare” purple elephant. Pongo has only a tiny little nostril and struggles to breathe. This is one of the symptoms of pulmonary hypertension, a rare condition affecting the lungs and heart. Pongo has been used in many awareness

The Rare Purple Elephant “Pongo” and his role in raising awareness of pulmonary hypertension, an initiative by the Greek pulmonary hypertension association Hellenic PH Read Post »

Hellenic Pulmonary Hypertension (ΠΝΕΥΜΟΝΙΚΗ ΥΠΕΡΤΑΣΗ ΕΛΛΑΔAΣ)

Hellenic Pulmonary Hypertension (ΠΝΕΥΜΟΝΙΚΗ ΥΠΕΡΤΑΣΗ ΕΛΛΑΔAΣ) Adress: Mytilinis 35, 112 56 Athens Greece Μυτιλήνης 35 4ος όροφος, Athina 112 56, Ellada Phone Number: +30 2110131542 Association President: Ioanna Alyssandratou (Αλυσανδράτου Ιωάννα Ασθενής) Association Email: info@hellenicph.org http://www.hellenicph.org/    

Hellenic Pulmonary Hypertension (ΠΝΕΥΜΟΝΙΚΗ ΥΠΕΡΤΑΣΗ ΕΛΛΑΔAΣ) Read Post »

The Bulgarian Society of Patients with Pulmonary Hypertension – BSPPH

The Bulgarian Society of Patients with Pulmonary Hypertension – BSPPH Adress:  София 1680, ул.“Пирински проход“, бл. 24 А, вх. Б, ап. 34              Sofia 1680, Pirinski Prohod Str., Bl. 24 A, ent. B, ap. 34 Phone Number: +359 896 276 762 Association President: Natalia Maeva (Наталия Маева) Association Email: bgspph@gmail.com https://bspph.net/

The Bulgarian Society of Patients with Pulmonary Hypertension – BSPPH Read Post »

“Pulmonary Hypertension-Get informed and inform”: educational video by the Greek association for pulmonary hypertension, Hellenic PH

“Pulmonary Hypertension-Get informed and inform” is an educational video about pulmonary hypertension. It can be viewed on the Greek association for Pulmonary Hypertension, Hellenic PH’s Youtube channel at this link

“Pulmonary Hypertension-Get informed and inform”: educational video by the Greek association for pulmonary hypertension, Hellenic PH Read Post »

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