Rare Disease Day
Building an Inclusive Future for Rare Disease Patients
Rare Disease Day takes place on 28 February each year and unites over 70 national partners across 100 countries to raise awareness and drive policy change for the estimated 300 million people living with a rare disease worldwide.
Our shared goal
Rare Disease Day is more than an awareness event – it is a globally coordinated movement toward a future where people with rare diseases receive equitable access to healthcare, research, and social support. Through global collaboration, advocacy, and action, we can create meaningful change for millions worldwide.
Rare Disease Day is established and globally coordinated by EURORDIS–Rare Diseases Europe in partnership with a network of over 70 national alliance patient organisations, including Retina International.
Rare Diseases: A Global Challenge
Delayed Diagnoses
Patients often wait four years or longer for an accurate diagnosis, enduring uncertainty and missed treatment opportunities.
Limited Treatment Options
Over 95% of rare diseases lack approved therapies, leaving patients with few medical solutions.
Social and Economic Barriers
Families often face educational, employment, and financial difficulties, as care responsibilities disrupt daily life.
Healthcare Access Inequalities
In many regions, rare disease patients encounter barriers to accessing specialised care, particularly in underserved communities.
Educating the Public
Additional resources should be provided to schools, workplaces, and public institutions.
Advocating for Policy Change
We must urge decision-makers to improve healthcare access and patient support.
Supporting Research and Care Initiatives
Increase donations to rare disease organisations and advocate for greater funding.
Why Rare Disease Day Matters
Raise public awareness
Increase understanding of rare diseases, their symptoms, challenges and impact on individuals and families.
Promote equitable access to healthcare
Advocate for fair access to quality healthcare, specialist services, diagnosis and treatment for everyone affected by a rare disease.
Encourage early and accurate diagnosis
Highlight the importance of timely diagnosis to help people access appropriate care, treatment and support.
Support research and innovation
Encourage investment in scientific research, the development of new treatments and the search for potential cures.
Improve access to treatments and therapies
Promote the availability, accessibility and affordability of effective medicines and therapies for rare diseases.
Empower patients and their families
Give people living with rare diseases and their families a stronger voice in healthcare decisions, research and policymaking.
Influence policies and decision-making
Encourage governments, healthcare organisations and policymakers to recognise rare diseases as a public health priority and develop supportive policies.
Strengthen global collaboration
Bring together patient organisations, researchers, healthcare professionals, policymakers and communities to share knowledge and work towards common goals.
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