“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 […]

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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 »

“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 »

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