Reye's Syndrome Resources and Support

Written by Cindie Slightham | Published on June 14, 2012
Medically Reviewed by George Krucik, MD

Reye’s Syndrome Resources

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 E-mail: nrsf@reyessyndrome.org www.reyessyndrome.org

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 www.ninds.nih.gov/disorders/reyes_syndrome

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 www.fda.gov

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 TDD: (888)232-6348 E-mail: cdcinfo@cdc.gov http://www.cdc.gov

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 http://rarediseases.info.nih.gov/GARD/Condition/7570/Reye_syndrome.aspx

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 E-mail: orphan@rarediseases.org http://www.rarediseases.org

Support for Parents and Families

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 E-mail: getinfo@madisonsfoundation.org http://www.madisonsfoundation.org 8. The NORD has developed the Inspire support community to provide information and resources for families, friends, and caregivers of children with rare diseases. Website: http://www.inspire.com/groups/rare-disease 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. Website: http://www.rareshare.org

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