National Rare Disease Day

Today is National Rare Disease Day. The main objective of Rare Disease Day is to raise awareness amongst THE GENERAL public and decision-makers about rare diseases and their impact on patients' lives.

What Constitutes a Rare Disease? In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. There are about 7,000 rare diseases, according to the National Institute of Health (NIH).

About 350 million people worldwide suffer from a rare disease.

*30 million people in the US are living with rare diseases. This equals 1 in 10 Americans or 10% of the US population.

*Europe has approximately 30 million people living with rare diseases.

A stark majority of rare diseases are genetic.

*80% of rare diseases are genetic in origin.

*This means that these diseases are present throughtout a person's life, even if symptoms do not immediately appear.

Too many children are affected.

*About 50% of those affected by rare diseases are children.

*About 30% of the children with rare disease will not live to see their 5th birthday.

*Rare diseases are responsible for 35% of dealths in the first year of life.

With rare diseases, come rare challenges...

*According to a study by Shire, on average, it takes 7.6 years in thr US and 5.6 years in the UK for a patient with a rare disease to receive proper diagnosis.

For more information and a list of many of the rare diseases around us visit:www.GlobalGenes.org

This information comes to us from the Special Needs Resource of friendshipcircle.org


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