At the latest edition of European Health Forum Gastein, Ipsen held an interactive session to raise awareness of the challenges
Category: Rare Disease
PBC Awareness Month: The power of patient voices
As anyone living with Primary Biliary Cholangitis (PBC) – a rare and progressive autoimmune liver disease1 – knows, the disease
Mapping valuable insights from the FOP patient community in the UK and Spain
FOP is an ultra-rare genetic disorder where extra bone formation takes place in soft tissues, including muscles, tendons and ligaments,
Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience
You can never truly understand what it’s like to live with an ultra-rare condition unless you’ve experienced it for yourself.
Understanding the Person Behind the Chart – Living with Primary Biliary Cholangitis
Primary biliary cholangitis (PBC) is a chronic autoimmune disease that affects liver function and can have debilitating symptoms for people
Learning the impacts of FOP from patients and their families – The Burden of Illness study
Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder where extra bone formation takes place in soft tissues, including muscles,
Primary Biliary Cholangitis (PBC): Looking Beyond the Liver
“Symptom burden is the main issue for the patient.”– Professor Andreas Kremer, Hepatologist of the University of Zurich Hospital Primary
Advancing Primary Biliary Cholangitis (PBC) Management: Insights from Experts
“We are on the cusp of an absolute explosion in our approach to managing PBC.” – Professor Gideon Hirschfield, Hepatologist
Collette: finding community through PBC
Collette spent almost 20 years going back and forth between different doctors and treatments, before she was finally diagnosed with
Fireside Chat: Innovation and Policy Change in Rare Diseases in Europe
The rare disease community continues to strive for innovative solutions to meet patient needs and ensure no person living with