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.
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.
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.
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
‘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
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
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
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
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,