Collette spent almost 20 years going back and forth between different doctors and treatments, before she was finally diagnosed with
Category: Rare Disease
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
Understanding the true impact of living with FOP
This year marks the 17th anniversary since the discovery of the ACVR1 gene was announced, a major scientific milestone in fibrodysplasia ossificans progressiva
Living with PBC: The Person Behind the Chart
‘Invisible’ diseases like primary biliary cholangitis (PBC) can be difficult to recognise, diagnose and to manage effectively. Here Prof. Gideon
A Life in a Day with FOP: from Empathy to Understanding
You can never truly understand what it’s like to live with an ultra-rare condition unless you’ve experienced it for yourself.
‘A Life in a Day’: the realities of living with FOP
I was honored to be invited to take on the challenge to live ‘A Life in a Day of a
ILC 2022: Let’s talk PBC
The International Liver Congress (ILC)1 provides a key opportunity for us to meet and discuss the management and research of
Working in rare disease has taught me to better support FOP
We are delighted that this FOP Awareness Day Dr Rolf Morhart shared his invaluable insights gained through his career working