Together for Rare Disease

We transform our science to make a meaningful difference to the lives of people living with rare diseases.

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Bringing science to life for people with rare diseases

We collaborate with the rare disease patient community to gather evidence and quality-of-life data that ensures our scientific discoveries, clinical studies and support solutions accurately address their needs.

One example of this is our collaboration with the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) and 14 national fibrodysplasia ossificans progressiva (FOP) patient organizations to co-create the first ever survey investigating the true impact of FOP on individuals and family members.

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Rare diseases are often not only difficult to diagnose and treat – there is also lack of awareness of the devastating impact that such conditions can have on peoples’ lives. We collaborate with rare disease communities on capturing and sharing real-life experiences, to help healthcare professionals and wider society to better understand the needs of people living with rare conditions and drive improvements in care.

Rare Disease Global Patient Affairs Director

Our work with the rare disease patient community

We work together with the rare disease patient community around the world on a range of different projects, across all stages from research and development, clinical study information, and patient support programs.


Ipsen has worked together with many Global and European communities, supporting people affected by rare diseases.

Testimonial from a Patient Organization

Patient Engagement has been and continues to be at the core of Ipsen’s activities and we at WAPO are very appreciative of the continuous synergy we can offer to both industry and the global pituitary patient community.

Experiences of living with rare diseases

Although living with a rare disease might feel daunting at times, you are certainly not alone. Behind every person, there is a story, and we believe that you tell it best.

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Collaborate with us

We are always looking to collaborate with patients and patient organizations to improve the lives of people living with rare diseases. Find out how you can work with us on a potential shared project.

Top patient stories in rare disease

05 September 2022 5 mins read
‘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 patient with FOP’ – but also apprehensive. The challenge simulated a day spent living as someone who has fibrodysplasia ossificans progressiva (FOP). FOP is a debilita

03 November 2022 4 mins read
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. And with this in mind, we recently embarked on a project to help healthcare professionals experience what it’s like to live

05 August 2022 3 mins read
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 liver diseases. Given the online format of recent meetings, it was great to have the chance to interact, discuss and debate in pers

20 December 2022 1 mins read
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 Hirschfield (University of Toronto, Departments of Medicine, Immunology and Medical Sciences) and Robert Mi

12 May 2023 4 mins read
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 (FOP) research that helped us understand what causes the condition. On April 23,