Stories

Rare Disease Day reminds us that rare conditions impact far more lives than many realize -over 300 million people globally, across more than 10,000 identified rare diseases. Yet what strikes me most on this day of recognition and reflection is that listening to patients remains an under-utilized lever for achieving progress in healthcare.

Each year, hundreds of children across Europe are diagnosed with pLGG. For many, the journey involves invasive surgeries, years of intensive chemotherapy and the lifelong impact of potential vision, speech and neurological complications. With no global standard of care, families are often left facing uncertainty, complexity and incredibly difficult choices often over many years.

In an era where breakthrough science increasingly depends on deep, cross sector collaboration, the longstanding partnership between Ipsen and the teams at the Institute for Research in Immunology and Cancer (IRIC) and its commercialization unit, IRICoR, at Université de Montréal stands out as a model for how academia and industry can accelerate science with purpose.

As the global GU oncology community prepares to gather in San Francisco for the American Society of Clinical Oncology Genitourinary Cancers Symposium (ASCO GU), colleagues from across Ipsen are energized by the opportunity to connect, learn, and contribute

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.