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 »

“European Reference Networks: A success story for patients living with a rare disease”, new booklet just issued by the EU Commission

The European Commission has published a booklet celebrating the European Reference Networks, which since 2017 have connected rare disease experts across Europe so that no patient is left behind, wherever they live. Through real-life stories, it shows how the 24 networks have changed patients’ lives: from long-awaited diagnoses to pioneering treatments, research advances and closer

“European Reference Networks: A success story for patients living with a rare disease”, new booklet just issued by the EU Commission 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 »

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