The Cornelia de Lange Syndrome (CdLS) Foundation has joined forces with over 25 million Americans living with a rare disease and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.
“When you or a loved one have a rare disorder like CdLS, it can be incredibly isolating, especially when the disorder presents along a spectrum and each case looks quite different,” remarked parent Molly Hesse. “Parents often know more about the disorder than medical professionals. It’s pretty jarring when you’ve rushed to the ER and the on-call doctor says ‘tell me about CdLS.’ Any opportunity to raise awareness is crucial. It builds knowledge, creates connections, and helps everyone learn more about the beautiful diversity found in all of us. Friends and family can play an important role in raising awareness by sharing messages and by asking questions!”
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people in the United States. There are more than 7,000 rare diseases currently identified and approximately 90% of them are still without FDA-approved medical treatments.
Rare Disease Day takes place every year on the last day of February—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the US by the National Organization for Rare Disorders (NORD®), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases. The core message of NORD’s “Show Your Stripes” campaign is to wear stripes on Rare Disease Day to raise awareness and show support for those living with rare diseases.