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01 March 2025 - 2 mins read
Rare Disease Day 2025: Imagining More for the Rare Disease Community
Every day, millions of people around the world face the immense challenges of living with a rare disease. For these individuals and their families, resilience is essential, and hope becomes a lifeline. Rare Disease Day is a moment to honour their courage, ...
27 February 2026 - 2 mins read
Listening isn’t a slogan, it’s the foundation of rare disease care
By Josep Catlla, EVP, Corporate Affairs Officer, Ipsen...
18 February 2026 - 3 mins read
Rare Disease Day 2026: Listening to Patients to Imagine Better Futures
Rare diseases are more common than most people imagine, in how many lives they touch and in how profoundly they shape everyday life for patients and families. Behind every diagnosis is a person navigating far more than symptoms: daily routines transformed,...
27 February 2025 - 3 mins read
24 March 2025 - 3 mins read
10 March 2025 - 3 mins read
21 May 2026 - 0 mins read
08 September 2025 - 2 mins read
Recognizing the Signs Early: Improving Outcomes for Children with Rare Liver Diseases
In a recent conversation, Professor Björn Fischler, paediatric hepatologist at the Karolinska Institute in Sweden, and Laure Dorey, Director of the French patient organisation AMFE and mother of a child living with biliary atresia (BA), together discussed...
15 June 2026 - 2 mins read
PFIC Colors: Making Sense of PFIC with the PFIC Network
Progressive Familial Intrahepatic Cholestasis (PFIC) can be a complex condition. Finding trusted information about PFIC shouldn’t be. PFIC Colors is designed to help families make sense of these conditions and find the information and support they need, ...
15 June 2026 - 2 mins read
Couleurs PFIC : Comprendre le PFIC grâce au réseau PFIC
La cholestase intrahépatique familiale progressive (PFIC) est une maladie complexe. Trouver des informations fiables à son sujet ne devrait pas l’être. PFIC Colors a été conçu pour aider les familles à mieux comprendre cette maladie et à trouver ...