https://www.eurordis.org/rare-disease-day-2025/

On 28 February 2025, the world will mark Rare Disease Day for the 18th time. Coordinated by EURORDIS-Rare Diseases Europe and co-organised by over 70 national partners, the campaign is celebrated in more than 100 countries. It brings together the patient community, policymakers, researchers, academia, industry, and allies to ensure that rare diseases remain a global priority. Beyond raising awareness, it is a movement that calls for better diagnosis, more research, improved treatments, and stronger policies.

Rare Diseases Are More Than You Can Imagine

Rare diseases may seem distant – something you hear about in the news – but they are closer than you think. More than 300 million people worldwide, or 1 in 17, live with a rare disease. That means someone you know—a neighbour, colleague, close friend, or family member – is impacted. It could be a child needing specialised care, a co-worker managing their condition quietly, or a relative living undiagnosed for years. While each rare disease is uncommon, together they impact millions, making them far more prevalent than their name suggests.

Despite advances in medicine, the path to diagnosis still takes on average four to five years. Many spend that time being misunderstood, misdiagnosed, or without access to the right specialists. When the diagnosis finally comes, it often brings more questions than answers.

For most rare diseases, there is no cure. Many rely on symptom management, medical interventions, or specialist care to improve quality of life. Research is ongoing, but progress can be slow. Because each condition affects a small number of people, access to treatment often depends on where you live, what resources are available, and whether enough attention is being paid to the condition.

This year’s Rare Disease Day campaign, More Than You Can Imagine, highlights how these conditions shape lives in ways many don’t see. Four families, from different corners of the world, are sharing their stories to bring these realities to light.