The Children’s National Health System in Washington, DC, which is the world’s largest provider of care for children with rare genetic disorders, has created the first center dedicated to advance the care and treatment of children and adults with rare genetic diseases.
The Children’s National Rare Disease Institute (CNRDI) will collaborate with the National Organization for Rare Disorders (NORD), which has designated the institute as its first center of excellence for clinical care for patients with rare diseases.
Any disease, illness, or disorder that affects fewer than 200,000 people in the United States is considered to be rare. Currently, an estimated 1 in 10 Americans have a rare disease, most of which are genetically based. Nearly 7000 rare diseases are known to exist.
“One of the chief challenges of 21st century pediatric medicine is our continued inability to provide more help to children born with rare genetic diseases,” Marshall Summar, MD, chief of genetics and metabolism at Children’s National and current chairman of the board for NORD, who will lead the CNRDI, said in a news release.
Dr Summar said the institute will provide a medical home for patients and families that offers the most advanced care and expertise for those with rare genetic disorders that remain largely unknown to the general medical community.
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