“While we have made great strides in the last thirty years to raise international awareness and recognition of rare diseases, we have a renewed commitment toward our goal of identifying, treating, and ultimately curing rare disorders through programs encouraging education, advocacy, research and service,” said Peter L. Saltonstall, president and CEO of NORD. “As we celebrate this milestone anniversary, NORD is proud to have the support of organizations such as NPS Pharmaceuticals who are bringing rare disease treatments to patients in need.”
About Rare Disease Day
Launched in Europe in 2008, World Rare Disease Day was recognized last year in more than 60 countries, each of which has a national sponsor. NORD is the sponsor in the U.S.
Each year, Rare Disease Day organizers around the world agree beforehand on a slogan to express the specific message for that year. For 2013, the slogan is “Rare Disorders Without Borders” to convey the global solidarity of the rare disease community. Rare disease patients all over the world face many of the same medical, social and economic challenges. Together, in solidarity, the global rare disease community is determined to build a better world for patients. Visit the Rare Disease Day website (
) to learn more.
In the U.S., the coalition supporting Rare Disease Day includes patient organizations and advocacy groups, medical professionals and associations, government agencies, researchers, and companies developing treatments for rare diseases. More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (
The National Organization for Rare Disorders (NORD) represents the nearly 30 million Americans affected by rare diseases. Founded in 1983, NORD is a non-profit organization providing programs of education, advocacy, research, and patient services. NORD administers patient assistance programs to help uninsured or under-insured individuals obtain medications they could not otherwise afford. It also provides information to patients and their families, research grants and fellowships, and advocacy on important public policy issues. Follow NORD at
and on Twitter at @RareDiseases.
About Short Bowel Syndrome
Short bowel syndrome (SBS) is a highly disabling condition that can impair a patient's quality of life and lead to serious life-threatening complications. SBS typically arises after extensive resection of the bowel due to Crohn's disease, ischemia or other conditions. SBS patients often suffer from malnutrition, severe diarrhea, dehydration, fatigue, osteopenia, and weight loss due to the reduced intestinal capacity to absorb nutrients, water and electrolytes. The usual treatment for SBS is nutritional support, including parenteral nutrition (PN) and/or intravenous (IV) fluids to supplement and stabilize nutritional needs.