In the United States, any disease that affects fewer than 200,000 people is considered rare. There are nearly 7,000 rare diseases.
Although each disorder alone affects a small number of patients, together they impact nearly 30 million Americans -- that's about 1 in every 10 people. Two-thirds of these are children.
There are certain challenges that all patients and families affected by rare diseases share. In addition to devastating medical problems and symptoms, it can take years to get a proper diagnosis. People with rare diseases can feel isolated as they struggle to find information and connect with others like themselves.
Research to find treatments for rare diseases can be more difficult. For example, until two years ago there were no approved treatments for myelofibrosis (my-lo-fi-brosis) -- a rare and life-threatening blood cancer that affects nearly 18,000 people in the U.S. Thousands of other diseases such as CADASIL, glycine encephalopathy], and Leigh Syndrome still have no approved treatments.
The National Organization for Rare Disorders (NORD) and its more than 200 member organizations can help those affected by rare diseases find information and connect with one another. NORD is also committed to helping patients access diagnostics and therapies that can extend and improve their lives.
NORD is proud to be the official U.S. sponsor of Rare Disease Day, a day dedicated to bringing widespread recognition of the challenges faced by people living with rare diseases. Rare Disease Day is February 28, 2015.
Alone we are rare. Together we are strong.™ Visit www.rarediseaseday.us and show your support by liking the Rare Disease Day Facebook page and following the Twitter feed where we encourage you to share your thoughts and experiences — because together we can make a difference.
