Wednesday, February 25, 2009

Get ready for Rare Disease Day!

This is a press release from NORD, the National Organization for Rare Disorders, about Rare Disease Day. I'll write more about this later.


Countdown to Rare Disease Day
CONTACT: Mary Dunkle
mdunkle@rarediseases.org(203) 744-0100 (office)(203) 942-6443 (cell)
FOR IMMEDIATE RELEASE


Day to Focus on Rare Diseases as Public Health Issue

Danbury, CT, Feb. 25, 2009-----Millions of Americans affected by rare diseases—and millions more around the world—will observe “Rare Disease Day” this Saturday (February 28, 2009) with special events, proclamations, and online postings.
A counter has been installed on the website of the National Organization for Rare Disorders (NORD) at
www.rarediseases.org to count the days, hours, minutes, and seconds until the first-ever Rare Disease Day to be observed in the United States.
“The theme of this day is that rare diseases are an important public health issue,” said NORD President Peter L. Saltonstall. “Although each disease may affect a small number of people, when considered together these diseases affect between 25 and 30 million Americans. And people with rare diseases share certain challenges such as difficulty getting a diagnosis, lack of treatment options, and problems related to reimbursement.”


NORD is organizing the Rare Disease Day observance in the U.S. Its counterpart in Europe, the European Rare Disease Organisation (EURORDIS), first got the idea for such a day last year and, this year, asked NORD to expand the observance to the U.S. Now, several other countries, including China and Australia, have signed on, too.

In the U.S., participating organizations asked their governors to issue proclamations declaring Feb. 28th Rare Disease Day in their state. At this time, the following states (shown in green) have issued proclamations:

A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting between 25 and 30 million people in the U.S.
On Saturday, patients and their families, researchers, medical professionals, and companies developing treatments will send messages around the world to raise awareness of rare diseases and the particular problems encountered by those affected. Several special events are planned around the country, and many videos, blogs, and patient stories will be posted online.

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