Did you know that 1 in 20 people will live with a rare disease at some point in their life, and more than 300 million people around the world live with a rare disease? What’s more, for many of these people, their disease goes undiagnosed and no cure is available.
Circumstances like this may leave people wondering what they can do to advance the cause of rare disease treatment. This February 29, we will celebrate Rare Disease Day, with a mission of raising awareness about rare diseases and their treatment among health professionals and those who have an interest in rare diseases.
Rare Disease Day started in Europe but has become a worldwide event, with more than 100 countries participating last year. In the United States, the National Organization for Rare Disorders is coordinating events in many states to mark Rare Disease Day.
At Children’s National Hospital, our Rare Disease Institute is a first-of-its-kind center focused exclusively on advancing the care and treatment of children and adults with rare genetic diseases. Seeing patients at more than 8,500 visits annually, it is one of the largest clinical genetics programs in the United States.
Our team of medical experts, metabolic dieticians, nurse practitioners and genetic counselors offer care for our patients’ physical needs. Our social workers, child life specialists and chaplaincy services staff offer support for your child and family’s emotional, spiritual and mental health needs. We also provide video visits through our telehealth program for patients who can’t travel to the hospital.
We’re celebrating Rare Disease Day at Children’s National on Friday, Feb. 28, with a day of activities – celebrating with our patients with face painting, superheroes, a magician, an Instagram takeover and more. We’ll continue to work on improving access to treatment and medical representation for individuals living with rare diseases and their families.