At Ipsen, patients motivate every decision we make.


Ipsen works with patients, their families, and more than 250 patient organizations around the world at a global, regional, and national level. Our key priorities are generating data and sharing experiences. We want to guarantee that patients are truly given a seat at the table when it comes to their care and the developments that Ipsen is making. We believe this kind of close collaboration and inclusion is essential to ensure we chart the right course.  Our goal is to understand and respond to patients’ needs, helping them and their caregivers at different points throughout their experiences. At Ipsen, we believe in working together with patients, for patients.


It all starts with listening. At Ipsen, we enter into dialogue with the patient community as early as possible when developing new medicines. Our focus is on long-term strategic engagement and partnerships with patient organizations.

Making a difference

Ipsen is committed to working closely and inclusively with the patient community to impact medical care and patient outcomes in our focus fields of Oncology, Rare Disease and Neuroscience.

Top patient stories

Browse all patient 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…

29 August 2023 2 mins read
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 –…

29 August 2023 1 mins read
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.  

29 August 2023 2 mins read
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…

29 August 2023 2 mins read
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.

29 August 2023 1 mins read
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…

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Making clinical trials accessible and understandable

We are committed to ensuring that all our published research is freely available to everyone. To make this happen, we work closely with the patient community to provide summaries of key clinical studies sponsored by Ipsen in easy-to-understand language, so they are not just available, but accessible to all.

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Ipsen Clinical Trials

Ipsen conducts first-in-the-world clinical trials to take science forward together. Our global network of healthcare professionals helps us test new treatments and ensure their efficacy and safety by conducting clinical trials. Our aim is to create new therapies and improve upon existing ones to improve patients’ lives and health outcomes.

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Our approach to responsibility

Ipsen unites all our employees behind our global commitment to doing business responsibly through Generation Ipsen – For Positive Change. This fully integrated approach is built on four pillars: Environment, Patients, People and Governance. Generation Ipsen is designed to ensure we meet patients’ needs while working in ways that are ethical, responsible and community-minded.