Reye’s syndrome is a rare but serious medical condition that can have long-term and debilitating effects on your child or your family. Resources are available that provide education and support for families dealing with Reye’s syndrome.
1. National Reye’s Syndrome Foundation (NRSF)
The National Reye’s Syndrome Foundation(NRSF) provides information to the public via campaigns, publications, training, and education. They also conduct support groups and provide telephone counseling.
426 N. Lewis St.
P.O. Box 829
Bryan, OH 43506
Phone: (800) 233-7393 or (419) 924-9000
Fax: (419) 924-9999
2. National Institute of Neurological Disorders and Stroke (NINDS)
The National Institute of Neurological Disorders and Stroke (NINDS) provides information and access to current clinical trial information regarding Reye’s Syndrome.
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424 or (301) 496-5751
TTY: (301) 468-5981
3. U.S. Food and Drug Administration (FDA)
The FDA will provide information regarding medication and other products that contain salicylates (aspirin).
10903 New Hampshire Ave.
Silver Spring, MD 20993
Phone: (888) 463-6332
The following agencies also provide information regarding Reye’s syndrome for medical professionals and families:
4. Centers for Disease Control and Prevention (CDC)
1600 Clifton Road
Atlanta, GA 30333
Phone: (800)232-4636 or (404)639-3534
5. The Genetic and Rare Diseases Information Center (GARD)
P.O. Box 8126
Gaithersburg, MD 20898-8126
Phone: (888) 205-2311 or (301) 251-4925
TTY: (888) 205-3223
Fax: (301) 251-4911
6. National Organization for Rare Disorders (NORD)
55 Kenosia Ave.
P.O. Box 1968
Danbury, CT 06813-1968
Phone:(800) 999-6673 (voicemail only) or (203) 744-0100
TTY: (203) 797-9590
Fax: (203) 798-2291
Madison’s Foundation connects parents whose children may have the same rare disease. It provides access to information and support for parents dealing with the same issues.
7. Madison’s Foundation
P.O. Box 241956
Los Angeles, CA 90024
Phone: (310) 264-0826
Fax: (310) 264-4766
8. The NORD has developed the Inspire support community to provide information and resources for families, friends, and caregivers of children with rare diseases.
9. RareShare is a website that lets people communicate with others who are affected by rare disorders. It allows people to share resources and their own personal experiences regarding the condition.