50% of those affected with Rare Disease are Children!

Of those children, 30% will not live to see their 5th birthday.

Rare Disease is a leading killer of our children. Nearly a third of the children with rare disease will not live to see their 5th birthday.

Rare Disease is responsible for 35% of all deaths (of any cause) during the first year of life!

Less than 5% of Rare Diseases currently have a FDA approved  disease altering therapy that permanently cures or stops the disease.

Rare Facts – what we’ve learned so far …

• 1 in 10 have a Rare Disease.
• over 7,000 Rare Diseases … 30 million Americans, 30 million Europeans, and over 350 million world-wide are affected by Rare Disease.
• 80% of Rare Diseases are genetic.
• If all Rare Disease patients live together we would be the 3rd most populous country.
• 50% of those affected with Rare Disease are children.
• 30% of Rare Disease children will not live to see their 5th birthday
• Rare disease is responsible for 35% of all deaths the first year of life.
• Less than 5% of the Rare Diseases have a FDA approved therapy.

February is Rare Disease month, culminating on February 29th – a Rare Day indeed – which is Rare Disease Day.
Stay tuned for month of Rare Disease facts, tidbits and things to know.

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