More Than 630 Partners Will Join NORD in Observing Rare Disease Day

Patients Will Share What It's Like to Live With A Rare Disease on February 29

WASHINGTON, Jan. 31, 2012 /PRNewswire-USNewswire/ -- On the ultimate rare day - February 29th - millions of people around the world will be observing Rare Disease Day.

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

And in the U.S., more than 630 patient organizations, government agencies, research centers and companies, who have signed up as "Rare Disease Day Partners," will join the National Organization for Rare Disorders (NORD) in supporting the day.

"This year marks the 5th anniversary of Rare Disease Day," said Peter L. Saltonstall, president and CEO of NORD.  "The event has grown every year and was observed in more than 60 nations last year.  The purpose is to raise awareness of rare diseases as an important public health issue."

Plans for this year include:

• An all-day symposium for patients and researchers at the National Institutes of Health (NIH) on Feb. 29
• The first-ever Patient Advocacy Day to be hosted by the Food and Drug Administration (FDA) on March 1
• A blitz of patient stories, photos, videos and blogs
• Opportunities to sign up on the national website (www.rarediseaseday.us) as Rare Disease Day Partners (companies and organizations) or Ambassadors (individuals)

Across the U.S., patients and their families will share their stories.  Rare Disease Day Partners will host special awareness events and activities.  All over the world, supporters will be voicing the same themes:

• While each disease is rare, collectively they affect many people.  An estimated 30 million Americans have rare diseases.
• Getting a diagnosis is difficult and often takes many years.
• Most rare diseases have no treatment.  Of the nearly 7,000 diseases considered rare in the U.S., only about 200 have approved therapies.
• Many rare diseases are not being studied by medical researchers.
• More than half of the patients are children and rare diseases tend to be serious, complex and chronic.

"In addition to articulating the challenges, we'll be celebrating the partnership that exists between patients and those seeking to help them," Saltonstall said.  The global theme for Rare Disease Day 2012 is "Solidarity."

Established in 1983, NORD is a non-profit organization representing all Americans affected by rare diseases.  It provides advocacy, education, patient assistance, and research programs.  Each year, NORD serves as the national sponsor for Rare Disease Day in the U.S.

In addition to U.S.-based activities, the day emphasizes global collaboration.  NORD sponsors Rare Disease Day in the U.S. as part of its partnership with the European Organisation for Rare Diseases, EURORDIS.

SOURCE National Organization for Rare Disorder (NORD)