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Health Department Hopes to Increase Awareness of Rare
Disease Day
Rare Disease Day is
globally recognized on the last day of February each year.
The main objective of Rare Disease Day is to raise awareness
amongst the general public about rare diseases and their
impact on patients' lives.
The Board of County
Commissioners in Lucas County passed a resolution to
recognize February 28, 2019 as Rare Disease Day in Lucas
County. Rare diseases are present across the medical
spectrum. Some are widely recognized by name, such as cystic
fibrosis (CF). Others are less known, such as the skin
condition epidermolysis bullosa (EB).
Most forms of cancer are
considered rare diseases. In the U.S., any disease affecting
fewer than 200,000 people is considered rare. This
definition comes from the Orphan Drug Act of 1983. There are
more than 7,000 rare diseases affecting 25-30 million
Americans. Approximately one in ten Americans are suffering
from rare diseases and more than half of them are children,
equating to one person on your daily elevator ride. Of the
7,000 known rare diseases, approximately 95 percent have no
treatment.
Many rare diseases and
disorders are not even being studied by medical researchers.
Awareness initiatives, like Rare Disease Day, are changing
that. Building awareness of rare diseases is so important
because one in 20 people will live with a rare disease at
some point in their life. Despite this, there is no cure for
the majority of rare diseases and many go undiagnosed.
Rare Disease Day improves
knowledge amongst the general public of rare diseases while
encouraging researchers and decision makers to address the
needs of those living with rare diseases |
