Stories

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 

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…

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…

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…

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…

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 –…

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.  

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…

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.

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…