Hayden's Hope

Friday, February 27, 2015

Rare Disease Day - Tomorrow February 28th

Thank you to Global Genes Project for this great article.

RARE Diseases: Facts and Statistics

Statistics and Figures on Prevalence of 
Genetic and Rare Diseases
Although rare and genetic diseases, and many
times the symptoms, are uncommon to most doctors,
rare diseases as a whole represent a large medical
challenge. Combine this with the lack of financial
or market incentives to treat or cure rare diseases,
and you have a serious public health problem.
Here are a few statistics and facts to illustrate the
breadth of the rare disease problem worldwide.

There are approximately 7,000 different types of
rare diseases and disorders, with more being
discovered each day

30 million people in the United States are living with
rare diseases. This equates to 1 in 10 Americans or
10% of the U.S. population

Similar to the United States, Europe has approximately
30 million people living with rare diseases. It is estimated
that 350 million people worldwide suffer from rare disease

If all of the people with rare diseases lived in one country,
it would be the world’s 3rd most populous country

In the United States, a condition is considered “rare”
if it affects fewer than 200,000 persons combined in
a particular rare disease group. International definitions
on rare diseases vary. For example in the UK, a
disease is considered rare if it affects fewer than 50,000
citizens per disease

80% of rare diseases are genetic in origin, and thus
are present throughout a person’s life, even if symptoms
do not immediately appear

Approximately 50% of the people affected by
rare diseases are children

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

Rare diseases are responsible for 35% of deaths
in the first year of life

The prevalence distribution of rare diseases is
skewed – 80% of all rare disease patients are 
affected by approximately 350 rare diseases

According to the Kakkis EveryLife Foundation,
95% of rare diseases have not one single FDA
approved drug treatment

During the first 25 years of the Orphan Drug Act
(passed in 1983), only 326 new drugs were 
approved by the FDA and brought 
to market for all rare disease patients combined

According to the National Institutes of Health Office 
of Rare Disease Research, approximately 6% of
the inquiries made to the Genetic and Rare 
Disease Information Center (GARD) are in
reference to an undiagnosed disease

Approximately 50% of rare diseases do not have a
disease specific foundation supporting or
researching their rare disease


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