Together for rare diseases

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.

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.

Alexander Artyomenko

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.

Understanding the Person Behind the Chart – Living with Primary Biliary Cholangitis (PBC)

We collaborated with PBCers in the USA, the Canadian PBC foundation, and the UK PBC foundation, on a co-created symposium at the American Association for the Study of Liver Diseases (AASLD), entitled ‘Living with PBC: The Person Behind the Chart’. The symposium raised awareness of the unique needs of people living with PBC among healthcare professionals, emphasizing the importance of looking ‘beyond the chart’ to understand the needs of people living with PBC and to adapt their care accordingly.

Putting yourself in the shoes of someone with an ultra-rare condition: the first FOP immersive experience

We worked on the first ever fibrodysplasia ossificans progressive (FOP) immersive experience, bringing to life the physical and emotional challenges that people living with the condition face every day.

Mapping valuable insights from the FOP patient community in the UK and Spain

We collaborated with FOP patient organizations in the UK and Spain to turn insights from the FOP patient community into actionable ideas.

PARTNERSHIPS

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.

World Alliance of Pituitary Organizations (WAPO)

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.

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.

Together for Rare Disease