Rare Disease Day is an international healthcare event observed annually on the last day of February, dedicated to raising awareness about rare diseases and improving access to diagnosis, treatment, and support for affected individuals and their families. In 2025, Rare Disease Day is observed on February 28.
Rare Disease Day
Purpose:
- Brings together patients, caregivers, healthcare professionals, and advocacy groups to discuss the challenges of rare diseases.
- Aims to increase awareness, promote early diagnosis, and improve access to treatment and medical support for rare disease patients.
Definition of a Rare Disease:
- According to the World Health Organization (WHO), a disease is considered rare if its frequency is less than 6.5-10 per 10,000 people.
- In India, the Organization for Rare Diseases India (ORDI) defines a rare illness as one affecting one in every 5,000 people or less, and it has identified 263 rare diseases in country. ORDI, an Indian non-profit compay, is set up to provide a collective voice for all Indian patients with rare diseases. it has listed 263 rare diseases in India.
2025 Theme:
- “More than you can imagine; an anthology of rare experiences.”
- The theme is a global call to highlight the unique challenges, resilience, and untold experiences of those suffering from rare diseases.
- It emphasizes the need for better support systems, innovative research, and improved treatment to enhance the quality of life for patients.
Background
Inception of Rare Disease Day:
- First coordinated by the European Organisation for Rare Diseases (EURORDIS) and held on February 29, 2008.
- The date was chosen because February 29 is a rare day, aligning with the concept of rarity, and it marked the 25th anniversary of the Orphan Drug Act in the United States.
Global Participation:
- The 18th edition of Rare Disease Day unites over 70 national partners across 100 countries.
- It aims to drive policy changes and improve the lives of the estimated 300 million people worldwide living with a rare disease.
Significance
Awareness and Advocacy:
- Rare Disease Day highlights the unique struggles and resilience of those affected by rare diseases.
- The event encourages governments, industries, and communities to support research, funding, and policy changes for rare disease treatment.
Impact on Global Health:
- By fostering international collaboration and sharing of best practices, Rare Disease Day contributes to improving the overall healthcare system for rare diseases.
- It provides a platform for patients and advocates to voice their experiences and influence global health priorities.