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07 July 2023 – 1 mins read
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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
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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…
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
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…
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…
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…
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…
Making clinical trials relevant to stroke survivors
At Ipsen, we endeavor for all our clinical trials to be reflective of the real world, and this requires the participation of a cross-section of people living with a particular condition. However, for some stroke survivors with post-stroke spasticity –…
Gathering insights to improve clinical trials – DIRECTION study patient advisory board
At Ipsen, we strive to improve the experiences of those participating in our clinical trials and do this by capturing insights from people living with the conditions we are investigating to help us to improve how we run our studies.
Unchartered territory: Mapping the cervical dystonia patient experience
We collaborated with Dystonia Europe to help uncover the unmet needs of people living with cervical dystonia – a rare, underdiagnosed neurological movement disorder that primarily affects the muscles in the neck. This can cause the head to turn to…
Co-creating recipe guides with the kidney cancer patient community to tackle undernutrition during treatment
In France, we partnered with patient organization Association pour La Recherche sur les Tumeurs du Rein (A.R.T.u.R) and experts to help people living with kidney cancer overcome undernutrition.
Uniting the neuroendocrine tumor (NET) community in Spain: Podcast series
We worked together with the Spanish patient organization NET España and local scientific society Grupo Español en Tumores Neuroendocrinos y Endocrinos (GETNE) on a podcast series to raise awareness of neuroendocrine tumors (NETs), a group of uncommon tumors that develop…