Saturday, February 28, 2009

Rare Disease Day 2009

Just thought I'd give a shout out to Rare Disease Day 2009. This is a day to recognise and raise support for rare diseases.

A few things we've learned about rare diseases:

According to the National Institutes of Health (NIH), there are almost 7,000 rare diseases
affecting nearly 30 million Americans.

Nearly one in 10 Americans has a rare disease. Many of these diseases are genetic and
present at birth (although some genetic diseases may not become apparent until much
later in life). About half of the people known to be affected by rare diseases at this time
are children. One of NORD’s continuing themes is that everyone knows someone
affected by a rare disease. With so many different types of diseases, even though each
one is rare, the impact on the American population as a whole is significant. For that
reason, rare diseases are an important public health concern.

What are some of the problems experienced by people who have rare diseases?
• Difficulty in obtaining an accurate diagnosis
• Limited treatment options
• Difficulty finding physicians or treatment centers with experience in treating a
particular rare disease
• Treatments that are generally more expensive than those for common diseases
• Reimbursement issues related to private insurance, Medicare, and Medicaid
• Difficulty accessing medical, social, or financial services or assistance because
those making the decisions are not familiar with the disease

Since Williams Syndrome is listed as a rare disease I thought I would join in and get the word out! To learn more or donate please click here:

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