On February 28, 2025, the 18th edition of Rare Disease Day will bring together over 70 national partners from 100 countries to raise awareness and drive policy change for the estimated 300 million people living with rare diseases worldwide.
Coordinated by EURORDIS-Rare Diseases Europe, this global campaign ensures rare diseases remain a priority, mobilising patients, researchers, policymakers, healthcare professionals, and industry leaders.
Though rare diseases may seem distant, they affect 5% of the global population at some point in their lives. These conditions impact individuals, families, workplaces, and entire communities, leading to complex medical, social, and economic challenges.
Key Issues:
Delayed Diagnoses: Patients often wait four years or longer for a proper diagnosis, enduring uncertainty and missing opportunities for treatment.
Limited Treatment Options: More than 95% of rare diseases have no approved therapies, leaving patients with few medical solutions.
Social and Economic Barriers: Families often face educational, employment, and financial challenges, as caregiving responsibilities disrupt daily life.
Healthcare Access Inequalities: In many regions, rare disease patients struggle to access specialised care, especially in underserved communities.
There is clearly an urgent need for greater awareness, policy reform, and community support.
The British Polio Fellowship supports Rare Disease Day because today polio is considered a rare disease. Wild poliovirus cases have decreased by over 99% since 1988, from an estimated 350 000 cases in more than 125 endemic countries, to just two endemic countries by October 2024. The UK has been polio-free since the mid-1990s.
Rare Disease Day is not just an awareness campaign—it is a movement toward a future where people with rare diseases have equal access to healthcare, research, and social support.
For more information, visit RareDiseaseDay.org
Comments