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Rare Disease Day February 28, 2010



The Central Nervous System Vasculitis Foundation to Observe Rare Disease Day


We will observe Rare Disease Day on February 28, along with the National Organization for Rare Disorders (NORD) and a coalition of more than 300 patient organizations, medical societies, government agencies and companies representing the rare disease community.  The purpose is to focus attention on rare diseases as a public health concern.

“People with rare diseases remain a medically underserved population around the world,” said Peter L. Saltonstall, president and CEO of NORD.  “Studies have shown that it typically takes many years to get an accurate diagnosis for a rare disease.  Also, little or no research is being done on many of these diseases, and more than 15 million Americans have rare diseases for which there is no treatment.”

Rare Disease Day started in Europe three years ago and now is spreading around the world.  NORD is the sponsor in the U.S., and (Partner) has joined the coalition organized by NORD to raise awareness of the needs of patients and families.

(Quote from your president about your organization, the disease of interest to you, events you may have planned for Rare Disease Day, etc.)

In the U.S., a disease is considered rare if it affects fewer than 200,000 Americans.  According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.  That’s almost one in 10 people.

Patients and their families often feel isolated and forgotten.  However, there are certain problems and challenges associated with having a rare disease that patients have in common, and Rare Disease Day is intended to focus attention on those needs.

Rare Disease Day activities in the U.S. will include a nationwide network of online videos, patient stories and blogs; newspaper, radio, and television reports; state and municipal proclamations; a Rare Disease Hall of Fame for researchers; and other activities designed to raise awareness of what it means to have a rare disease.

Rare Disease Day 2010 also will highlight the need for more medical research and the unique partnership that exists between rare disease patients and researchers.  Government entities that have signed on with NORD as “Rare Disease Day Partners” to help promote awareness of the day include the NIH Office of Rare Diseases Research, Food and Drug Administration (FDA) Office of Orphan Products Development, and Social Security Administration.

“More than half of the people who have rare diseases are children,” Saltonstall said.  “Parents often have difficulty finding a medical expert for their child or accessing other needed services.  Also, many rare diseases have no approved treatment, and insurance may not cover treatments that aren’t approved.”

In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases.  Since then, more than 340 “orphan” drugs and biologics have been approved by FDA.  While FDA estimates that from 11 to 14 million Americans benefit from these products, that still leaves more than 15 million Americans with diseases for which there is no approved treatment.

Rare Disease Day was launched by the European Rare Disease Organization, EURORDIS, in 2008.  Last year, EURORDIS asked NORD to sponsor Rare Disease Day in the U.S.  Rare Disease Day also is observed in other parts of the world, including Canada, Australia, China and—for the first time this year—Japan.

NORD was established in 1983 by patient leaders who helped get the Orphan Drug Act passed.  It provides advocacy on behalf of the rare disease community; research grants and fellowships; educational services; and patient assistance programs.

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NORD’s media contact:
Mary Dunkle
(203) 744-0100
mdunkle@rarediseases.org

Partner media contact and website:

For information on Rare Disease Day activities in the U.S.: www.rarediseaseday.us

For information about NORD: www.rarediseases.org

 
 

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