What patients and families need to know
Resources for Families
At our Rare Disease Institute, Children's National experts offer advice on a variety of topics relating to the genetics and metabolism of our patients and families. Additional resources below may also be helpful for families to review:
National Organization for Rare Disorders
Children's National was designated as the first Center of Excellence by the National Organization for Rare Disorders (NORD). This honor recognizes and encourages excellence in clinical care and patient support services for individuals and families living with a rare disease in the United States. Based on the success of our efforts as the pilot for this program, Children's has helped NORD develop standards and tools for this effort and we will remain as the anchor program.
Through this program, NORD aims to:
- Reduce the time to reach an accurate diagnosis
- Improve access to appropriate treatment and quality care
- Ensure patients have input into the development and evolution of clinical care guidelines and treatment protocols
- Increase the availability of data to support clinicians and researchers in the diagnosis and development of treatments for rare diseases
Learn more about NORD
and search for rare diseases in its database
Genetics Home Reference
Presented by the U.S. National Library of Medicine, part of the National Institutes of Health
On this easy-to-navigate site, readers will learn about the effects of genetic variation on human health. Topics cover the signs and symptoms, causes and inheritance of more than 1,200 health conditions with a genetic basis. You'll also find information on gene activity, chromosomes and DNA as well as basic information about genetics.
View the Genetics Home Reference website.
Our video series explains what to expect at your genetics visit and covers newborn screening, genetic testing and a variety of other topics related to genetics.
View the videos (en español).
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