Established in 2008 by EURORDIS and its Council of National Alliances, Rare Disease Day is a global movement with the goal of spreading awareness of rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day has assisted in building international diverse rare disease communities who have united in their efforts to advocate for those with rare diseases.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Facts:
1 in 5 cancers is rare. The incidence for rare cancers is less than 6 individuals per 100,000 a year.
Equity for people living with a rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.
70% of genetic rare diseases start in childhood.
5% of the worldwide population are currently affected by rare diseases.
The population of people with rare diseases equals that of the worlds 3rd largest country.
There are 6000+ identified rare diseases.
There are 300 million people worldwide living with a rare disease.
72% of all rare diseases are genetic. Whilst other are the result of infections, allergies, and environmental causes or are rare cancers.
5-year survival rate is lower for patients with a rare cancer than for those diagnoses with a more common cancer.
Rare diseases affect 1 in 10 people.
More than 50% of rare diseases are still without an FDA-approved treatment.
1 in 2 rare diseases don’t have a foundation or research support groups.
4.8 years is the average time it takes for rare patients to receive an accurate diagnosis.