Rare Disease Archives - Global

PBC Awareness Day: Confronting Bias and Elevating Patient Voices

lady and her friends and family for ipsen for CAPA pictures by ioan said photography

An article by Josep Catllà, Executive Vice President, Chief Corporate Affairs Officer For the thousands of individuals, mostly women, living

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

Beyond tired: Understanding fatigue in Primary Biliary Cholangitis

Most common symptoms of PBC Fatigue is a common and debilitating symptom of PBC Up to 55% of people living

Understanding PBC: Managing what Matters Most 

Ipsen’s Sandra Silvestri sat down with Dr. Laura Cristoferi, Professor Mark Swain, and Professor David Jones to explore the latest

A Journey of Strength and Hope, Joris and Maria’s story

Joris is a thriving seven-and-a-half-year-old boy who has been on a journey requiring strength and hope from himself, and all

Céline and Suzanne: Navigating Alagille Syndrome

At just nine years old, Suzanne is a bright, creative young girl who loves dancing, drawing, exploring the woods, and

Living with Rare Liver Diseases: Unique challenges, Shared Experiences 

Professor David Jones and Professor Valerie McLin were compensated by Ipsen for their time.   Rare cholestatic liver diseases are conditions

Scientific Journey from Coal to Diamond: Myths and Misperceptions in Rare Disease Innovation 

. An article by Jennifer Schranz, Senior Vice President and Global Head of Rare Diseases at Ipsen In storytelling, you

Breaking Barriers to Rare Disease Innovation: Reflections from the World EPA Congress 

. An article by Philippe Ghyssels, Vice President Corporate and Global Public Affairs For individuals living with a rare disease, every

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