The Invisible Infrastructure of Care
What a new database on rare diseases reveals – and why patients still have to bridge the gaps between medical […]
RareDisease
Impressions and insights from the 13th European Conference on Rare Diseases and Orphan Products (ECRD 2026)
Event: European Conference on Rare Diseases & Orphan Products (ECRD 2026)Place & date: O2 Universum, Prague & online, 3–4 June
Swiss Patient Forum 2026
On 13 February 2026, I took part in the Swiss Patient Forum 2026 at Hotel Ador in Bern as a
RDAF workshop on patient participation in decision-making processes
RDAF workshop “Patient Participation in Decision-Making Processes”, 27 November 2025, Lucerne Cantonal Hospital On 27 November 2025, the RDAF workshop
1. DACH Congress on Rare Diseases – A Milestone in Innsbruck
Congress Innsbruck, 4–5 April 2025 In Europe, around 30 million people are affected by a rare disease – and there