On the last day of February, millions of people across the U.S. will join the National Organization for Rare Disorders (NORD) in observing Rare Disease Day, including many of our dedicated employees and patient families at Texas Children’s Hospital.
Booths will be set up from 9 a.m. to 3 p.m. Monday, February 26, on The Auxiliary Bridge where several rare disease organizations will be on hand to provide helpful resources and information. The Health Museum located at 1515 Hermann Drive in Houston, TX, will also host a free event from 4 p.m. to 8 p.m. to raise community awareness about rare genetic diseases.
Approximately one in 10 people in Texas are living with a rare disease and nearly one in 6 children in the U.S. have a developmental disability, many of which are caused by a rare genetic disorder. A disease is considered rare if it affects less than 200,000 Americans. There are nearly 7,000 rare diseases, and according to the National Institutes of Health (NIH), about 30 million Americans have a rare disease.
Several of these rare genetic disorders include velocardiofacial/DiGeorge syndrome, fragile X syndrome, phenylketonuria, osteogenesis imperfecta (brittle bone disease) and sickle cell disease. Individually these conditions are rare, but collectively, they are common and all of us have been impacted in some way by someone with a rare condition. However, families frequently feel isolated and alone in caring for their child or adult family member.
In a concerted effort to increase local awareness about rare diseases, we all can show our support and solidarity with these families, while also providing hope for positive changes to come.