The National Organization for Rare Disorders (NORD), notes that in the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans. There are approximately 6,800 such diseases, according to the National Institutes of Health (NIH). While each disease is rare, when considered together they affect nearly 30 million Americans or almost 1 in 10 people. There are certain challenges that all patients and families affected by rare diseases share.

The Central Directory of Resources helps families and service providers to locate reliable information about rare disorders.  Families with a child who has a rare disorder may also wish to connect with other families who have experience with that condition.

Resources

• The National Organization for Rare Disorders (NORD) is dedicated to helping people with rare diseases. The Family Support Program  maintains a subscription to NORD’s Rare Disease Database for access to reports on more than 1,200 diseases. Please contact us for more information.
• The Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH) coordinates research and information on rare diseases.
• Family Support NetworkTM affiliate programs arrange parent-to-parent matches to connect families with children who have the same diagnosis or condition.  Where appropriate parents may be matched with someone outside their local community.