DANA POINT, Calif., Nov. 1, 2010 /PRNewswire-USNewswire/ — The
Global Genes Project (www.globalgenesproject.org),
a non-profit advocacy organization that aims to raise awareness
about the prevalence of rare diseases worldwide, today launched the
7,000 Bracelets for Hope™ campaign. The 7,000 Bracelets for
Hope™ campaign is designed to draw attention to an estimated
7,000 different chronic, life-threatening and fatal rare diseases
and disorders affecting approximately 30 million Americans and
millions more globally.
The 7,000 Bracelets for Hope™ awareness campaign is
designed around a denim blue jeans theme and the color blue which
is associated with health, healing and faith. The vast majority of
the 7,000 rare diseases identified by the National Institutes of
Health (NIH) are caused by gene defects.
“Cause bracelets are widely available for breast cancer and
heart disease but there has never been a unifying symbol, color or
bracelet that represents the rare disease community worldwide,”
said Nicole Boice, founder, Global Genes Project. “Since launching
the 7,000 Bracelets for Hope™ campaign a few weeks ago, we
have already received unique bracelet designs made from cut strips
of recycled blue jeans as well as vintage blue glass and crystal
beads. The creativity from volunteers is truly inspiring!”
A Global Crisis – Only 352 Rare Disease Drugs Developed Over
Past 27 Years
In January 1983, Congress passed the Orphan Drug Act to
encourage pharmaceutical and biotechnology companies to develop
drugs for rare diseases that have small patient populations. In the
United States, rare diseases are defined as affecting fewer than
200,000 individuals per rare disease and prevalence varies greatly,
from as few as 300 for a rare enzyme deficiency to just under
200,000 for cancer of the thyroid gland.
Despite market incentives put in place to induce companies
to
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