NORD logo

Rare Disease Day logo

"Loading the player…"
Kiera and her family are connecting with others affected by a rare disorder known as “CDKL5.”
Kiera and her family are connecting with others affected by a rare disorder known as “CDKL5.”
Matthew supports his little sister, Lauren, in raising awareness of Greig’s syndrome.
Matthew supports his little sister, Lauren, in raising awareness of Greig’s syndrome.
Members of the Midlands, SC, Palmetto PHriends share information about pulmonary hypertension.
Members of the Midlands, SC, Palmetto PHriends share information about pulmonary hypertension.

NORD Leads Millions of Americans in Observing Rare Disease Day

Rare Disease Community Commemorates 30th Anniversary of Orphan Drug Act and of NORD

Washington DC, February 27, 2013 /PRNewswire/ — Under the leadership of the National Organization for Rare Disorders (NORD), the primary organization in the U.S. representing people with rare diseases, millions of Americans will gather tomorrow to observe the 5th annual Rare Disease Day. This international observance unites people around the globe to focus attention on the estimated 300 to 350 million patients worldwide afflicted with rare diseases and to recognize that their needs are a global public health concern. In the U.S., a rare disease is one that affects fewer than 200,000 Americans.

“Everyone knows someone with a rare disease,” says Peter L. Saltonstall, president and CEO of NORD. “Even though there are 30 million Americans living with rare diseases, many of which are chronic and life-threatening, there are no treatment options for about 95% of these conditions and many of them are not even being studied by researchers.”

On Rare Disease Day, patients and those seeking to help them promote awareness of the need for more research, effective treatments and patient access to treatments. Fighting diseases that affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation. The worldwide theme for Rare Disease Day 2013 is “Rare Disorders Without Borders.” Patients who feel isolated because their diseases are rare are reminded that there are nearly 7,000 such diseases affecting 60 million people in the U.S. and Europe alone.

This year, Rare Disease Day has special significance in the U.S. because 2013 is the 30th anniversary of NORD and of the Orphan Drug Act, which provides federal incentives to encourage the development of treatments. This law has resulted in the introduction of more than 400 treatments for specific rare diseases, with hundreds more in the research pipeline.

NORD was established in 1983 by patient advocates who had worked together to get the Orphan Drug Act enacted. Actor Jack Klugman, who died in December 2012, also helped these patient advocates by airing two episodes on his popular TV show, Quincy ME, about rare diseases. The storylines explored the need for legislation to enable companies to take on the financial risk of developing therapies for small patient populations.

About Rare Disease Day and NORD
This year, Rare Disease Day will be observed in approximately 70 nations. On the day, patients, researchers, and others will post photos, videos and blogs online. Special events are planned at hospitals, universities and other venues across the U.S. NORD hosts a national website at www.RareDiseaseDay.US where all events are listed. NORD’s European partner, EURORDIS (the European Organisation for Rare Diseases), hosts a global website at www.RareDiseaseDay.org.

Founded in 1983, the National Organization for Rare Disorders (NORD) is a non-profit organization providing programs of education, advocacy, research, and patient services including patient assistance programs. Follow NORD at www.rarediseases.org, on Facebook and on Twitter at @RareDiseases.

Media Contact:

Mary Dunkle
NORD
mdunkle@rarediseases.org
(203) 744-0100, Ext. 217