Rare Diseases Take Center Stage, At Least For One Day

Patients and supporters promote awareness on Rare Disease Day

WASHINGTON, Feb. 28, 2012 /PRNewswire-USNewswire/ -- From scientific symposia to balloon launches and coloring contests, the global rare disease community will be observing Rare Disease Day on Feb. 29.  This annual event highlights the need to focus attention on rare diseases as a public health concern.

(Logo: http://photos.prnewswire.com/prnh/20110719/DC37656LOGO-b)

The National Organization for Rare Disorders (NORD) sponsors this annual event in the U.S., working with partners around the world.  This year, according to NORD, the array of activities is even broader than usual.

"The keynote events are a scientific conference at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA)," said Peter L. Saltonstall, NORD president and CEO.

Other events include the following:

• conferences at major medical institutions such as the Whitehead Institute in Cambridge, the Sanford-Burnham Medical Research Institute in California, and the Shands Hospital of the University of Florida College of Medicine
• a concert in the Bronx organized by the Albert Einstein College of Medicine at which all the performers will be young individuals affected by rare diseases
• community awareness events in St. Louis, Oklahoma and Texas
• a "Leap for Rare Diseases" at a middle school in Leavenworth, Kansas
• a bluegrass concert in Rhode Island for which the band has written a special Rare Disease Day song
• a "Handprints Across America" photo gallery
• and a blizzard of stories, photos and videos posted online.

All around the world, the key messages will be the same: that rare disease patients and their families experience challenges such as diagnosis delay, too little research and too few treatments that require attention from a public health perspective.

"Every day, NORD gets calls and emails from families who feel isolated and are desperate to connect with others," Saltonstall said.  "Rare Disease Day is a wonderful way to facilitate that and, at the same time, to make the broader world aware of the issues these families are facing."

To learn more about Rare Disease Day, visit the U.S. website at www.rarediseaseday.us and the global website at www.rarediseaseday.org.

SOURCE National Organization for Rare Disorder (NORD)