On the occasion of the Rare Disease World Day, 28 February, Zdravlje is sharing the general public information to help raise the awareness and generate the change for the 300 million people worldwide living with a rare disease, their families and carers.

What is a rare disease?

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000.

Rare disease prevalence

• Over 6,000 different rare diseases have been identified to date.
• Rare diseases currently affect 3.5% – 5.9% of the worldwide population, an estimated 30 million people in Europe, 25 million in the USA and 300 million worldwide.
• 72% of rare diseases are of genetic origin, and are often chronic and life-threatening.
• Others are the result of infections (bacterial or viral), allergies and environmental causes.
• 70% of those genetic rare diseases start in childhood.

See the video at: https://youtu.be/-N8zbmMONSc

Reference:

Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database, European Journal of Human Genetics (September 2019)

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