NATIONAL ORGANIZATION FOR RARE DISORDERS

 
General Information
Description of ProgramActs 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.
Geographic AreaNassau, Suffolk
Public TransportationAccessible by public transportation
Facility/ADA AccessWheelchair Accessible
Funded ByGrants and contracts, contributions, membership fees, annual fundraising events and revenues from sales of NORD products.
 
Client Information
EligibilityPatients, families, healthcare professionals and organizations within the rare disease community.
 
Availability
Hours of OperationM-tues,weds,thurs.8:30am-7pm-Fri 8:30am-6:00pm
 
Contact Information
Contact's NamePeter L. Saltonstall
Contact's PositionPresident/CEO
Physical Site Address 155 Kenosia Avenue
Physical Site City, State, ZipDanbury, CT 06813-1968
Mailing Address 155 Kenosia Avenue
Mailing City, State, ZipDanbury, 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
Program Emailorphan@rarediseases.org
Web Addresswww.rarediseases.org
 
Additional Information
Volunteer OpportunitiesYes
Last UpdateJan2020
 
Affiliated Agency and Services
Affiliated Agency:
NATIONAL ORGANIZATION FOR RARE DISORDERS
This Program: NATIONAL ORGANIZATION FOR RARE DISORDERS
Affiliated Services: NATIONAL ORGANIZATION FOR RARE DISORDERS