Together for rare diseases

Our collaborations with patient organizations

Working together with Global and European patient organizations

In rare diseases we are working together with a number of Global and European patient communities.

‘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)

Projects developed together with patient communities

Together with patient communities around the world, we have worked on projects covering research and development, clinical study information, and patient support programs. The aim of these projects is to help make a difference for patients, their families, and caregivers.

Explore some our projects below:

Our areas of expertise

Rare diseases are defined as those that affect a small percentage of the population – for example, in Europe this applies to conditions that affect fewer than 1 in 2000 people, and in the United States as affecting fewer than 200,000 people.20,21 80% of rare diseases are genetic, which means they are caused by a change to a person’s DNA, this change can be spontaneous or passed down from biological parents. It is present throughout life and in some cases rare diseases are life-threatening.20

There are currently between 6,000 and 8,000 known rare diseases which affect around 300 million people around the world.22

Because rare diseases aren’t very common, awareness is often low, and community support as well as education for healthcare professionals about specific conditions, is vitally important.

In the Useful resources section of this page you will find links to Ipsen websites where you might be able to find additional information and support about different rare diseases.

You can also listen to stories from people affected by rare diseases in the Experiences of living with rare diseases section below. 

Ipsen is committed to supporting the patient and caregiver communities in rare diseases. Our expertise covers specific rare conditions listed below.


Fibrodysplasia ossificans progressiva (FOP)

Precocious puberty

Growth disorders

Finding information and support

There are a number of websites where you can find reliable information. Patient organization websites are often a good place to start for information and guidance on how to access physical and emotional support.

If you don’t know what local organizations exist, Global and European organizations can often help people to find local resources and groups.

Experiences of living with rare diseases

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

If you have been affected by any of the experiences or topics discussed in this video, talk to your healthcare professional who may be able to direct you to the additional support you need.



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