NATIONAL ORGANIZATION FOR RARE DISORDERS | NATIONAL ORGANIZATION FOR RARE DISORDERS
55 Kenosia Avenue, Danbury, CT 06813-1968
Eligibility
Call for information
Hours
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Website
http://www.rarediseases.orgApplication process
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Fees
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Service area
Nassau County, NY
Suffolk County, NY
Acts as a clearinghouse and referral service for information on rare diseases. Maintains a comprehensive rare disease database, which provides families with information on over 1,100 rare disorders. Its networking program links families with other families who are afflicted with similar disorders. Accumulates and disseminates information about orphan drugs and devices, making known their availability. Advocates the needs of people with rare disorders. Provides disease specific medical reports written in lay language. Also offers a Medication Assistance Program for specific drugs and a medical equipment exchange program. Publishes Orphan Disease Update and Resource Guide . Call for more information.
Last assured
01/03/2019
Providing organization
NATIONAL ORGANIZATION FOR RARE DISORDERS
Acts as a clearinghouse and referral service for information on rare diseases. Maintains a comprehensive rare disease database, which provides families with information on over 1,200 rare disorders. Its networking program links families with other families who are afflicted with similar disorders. Accumulates and disseminates information about orphan drugs and devices, making known their availability. Advocates the needs of people with rare disorders. Provides disease specific medical reports written in lay language. Also offers a Medication Assistance Program for specific drugs and a medical equipment exchange program. Publishes Orphan Disease Update and Resource Guide . Call for more information.