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Showing: 1 – 10 of 66 stories
01 September 2023 – 4 mins read
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 can have a significant impact on a person’s day to day life and relationships.2
29 August 2023 – 1 mins read
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, causing irreversible and progressive loss of mobility and leading to severe disability. To better understand the struggles that people living…
29 August 2023 – 2 mins read
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. With this in mind, we recently embarked on a project to help healthcare professionals experience what it’s like to live…
29 August 2023 – 2 mins read
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 living with the condition, including unrelenting itch, fatigue, pain and dry eyes and mouth. In addition, people who live with…
29 August 2023 – 2 mins read
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, tendons and ligaments, causing irreversible and progressive loss of mobility, leading to severe disability. While the impact of the disease…