What is a Rare Disease?
According to the World Health Organization (WHO), a disease is considered to be rare when the number of people affected is less than 5 per 10,000.
There are between 5,000 and 8,000 rare diseases most of them with a genetic basis. Rare diseases are serious chronic diseases, and may be life-threatening. Approximately 7% of the world’s population is affected by a rare disease. This represents an important group of patients that need specialized attention in health services to cope with their disease. In recent decades, worldwide efforts have focused considerable attention to encourage research, development and marketing of treatments for rare diseases. While policy and regulatory advancements have been made, greater reform is needed. ERCAL recognizes the importance of acknowledging rare diseases, and Works hand in hand with associations from Latin America and the Caribbean to raise awareness regionally.
Statistics
Latin American Rare Disease prevalence: (38-63 million people)
Regulations
UN Resoultion for People with Rare Diseases: December 16, 2021 Resolution on “Addressing the challenges of persons living with a rare disease and their families.”
Resolution highlights:
1. Inclusion and participation in society of people living with a rare disease and their families.
2. The guarantee of universal and equitable access to quality health services without financial hardship.
3. Promoting national strategies and actions.
4. Integrating rare diseases into UN agencies, programs and priorities.
5. Publishing periodic reports by the UN to monitor progress in the implementation of the resolution.
