Rare Disease Day 2026: Listening to Patients to Imagine Better Futures

Rare diseases are more common than most people imagine, in how many lives they touch and in how profoundly they shape everyday life for patients and families. Behind every diagnosis is a person navigating far more than symptoms: daily routines transformed, ambitions redefined, misunderstanding and isolation to navigate and families adapting to uncertainty with resilience and hope.

True awareness begins with listening. At Ipsen, that means listening not only to patient needs to define clinical outcomes, but to the stories that define people’s days—their fears, frustrations, joys, and aspirations. These real‑world insights reveal what it truly means to live with a rare disease, not just to be treated for one.

Centering Innovation on the Patient Experience

When we listen deeply, we can imagine better futures, futures shaped by what patients tell us they want to do, feel, and hope for. This imagination is not abstract. It is grounded in the lived experience of individuals and families who share openly so that treatment and care can improve.

These insights guide our work across the entire medicine lifecycle, from research and development to medical strategy, education, and access. Responsible, patient‑focused innovation begins with understanding the whole journey.

How Ipsen Builds Awareness Through Listening

At Ipsen, awareness is an active process, one rooted in rigorous, structured listening. We integrate patient perspectives through:

• Patient journey mapping, capturing the lived experience from diagnosis to long-term management
• Evidence generation, exploring where needs remain unmet
• Advocacy partnerships, collaborating with global patient organisations
• Co-created resources, designed with and for patients, families and caregivers

We also share what we learn in our own awareness activities, ensuring that the voices of patients reach wider audiences. This is why Rare Disease Day is a central moment in the Ipsen calendar: it allows us to stand alongside the global rare disease community to raise understanding and amplify impact.

Fondation Ipsen: Expanding Understanding Through Science and Society

Fondation Ipsen is a non-profit foundation, operating under the aegis of the Fondation de France, and dedicated to raising awareness and improving the lives of people living with rare diseases. The Foundation helps the wider public better understand these conditions by promoting education, sharing knowledge, and fostering dialogue between science, medicine, and society.

Through global initiatives, publications and partnerships, the Foundation brings visibility to topics that are often unseen or misunderstood, ensuring that the real experiences of rare disease communities are recognised.

Progress Requires a Shared Commitment

Rare Disease Day is a powerful reminder that progress does not happen in isolation. It depends on collaboration between patients and families, advocacy groups, healthcare professionals, researchers and scientists, policymakers, the pharmaceutical industry.

By listening and acting together, we can help people living with rare diseases achieve more than any one organisation—or any one imagination—could achieve alone.

Imagining More, Together

In 2026, we reaffirm our commitment to the rare disease community: to listen, to learn and to act. The stories patients share with us guide our work and strengthen our resolve. When we unite around their voices, we can build a future where people living with rare diseases can achieve more than they ever imagined.