NATIONAL ORGANIZATION FOR RARE DISORDERS

NATIONAL ORGANIZATION FOR RARE DISORDERS

 
General Information
Description of ServiceActs 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.
Geographical AreaNassau, Suffolk
Public TransportationAccessible by public transportation
Facility/ADA AccessWheelchair Accessible
 
Client Information
EligibilityPatients, families, healthcare professionals and organizations within the rare disease community.
 
Availability
Hours of Operation M-tues,weds,thurs. 8:30amam-7pm-fri 8:30am-6:00pm
Contact Information
 
Contact's Name Peter L. Saltonstall
Contact's Position President/CEO
Physical Site Address 1 55 Kenosia Avenue
Physical Site City, State, Zip Danbury, CT 06813-1968
Mailing Address 1 55 Kenosia Avenue
Mailing City, State, Zip Danbury, CT 06813-1968
Main Phone (203)744-0100; (800)999-6673 (Patient Services M-Th 9am-8pm, F 9am-6pm)
Other Phone (844)259-7178 (Spanish)
Fax (203)263-9938
Service Location Email orphan@rarediseases.org
Web Address www.rarediseases.org
 
Additional Information
Volunteer OpportunitiesYes
Last UpdateJan2020
 
 
Affiliated Agency, Programs, and Services
Affiliated Agency: NATIONAL ORGANIZATION FOR RARE DISORDERS
Affiliated Program: NATIONAL ORGANIZATION FOR RARE DISORDERS
This Service: NATIONAL ORGANIZATION FOR RARE DISORDERS
 
Taxonomy Postings
Posted to Categories: Children and Youth With Disabilities/Health Conditions (YJ-8750.1500)
Families/Friends of Chronically Ill (YJ-2400)
Genetic Disorders (YF-3000.3280)
Health Related Advocacy Groups (TD-1600.2570)
Information Clearinghouses (TJ-4500.3000)
Mitochondrial Diseases (YF-3000.5080)
Orphan Diseases (YF-3000.5760)
Specialized Information and Referral (TJ-3000.8000)
Volunteer Opportunities (PX)