Health/Disability Related Support Groups

Health/Disability Related Support Groups ( Orphan Diseases )


The agency provides health services related to rare disorders to individuals in Los Angeles County and throughout the United States. Services include disease/disability information, health/disability related support groups and printed materials. There are no geographic restrictions.

The agency maintains a computerized database and acts as a national clearinghouse for information about rare disorders. It also links individuals and families who have similar disorders for mutual support, accumulates and disseminates information about rare, hard-to-find drugs and devices, encourages and funds related research, provides information for the public and the healthcare professionals, provides technical assistance for new support groups, and advocates for people who have rare disorders.

Referrals for support groups are available; if no local group exists. People may find patient organization programs providing support groups on the agency's web site.

Printed materials include the agency newsletter, Orphan Disease Update, provides information for individuals, families, and professionals about new scientific developments, new Orphan Drugs, coping skills, and resources. APPLICATION PROCEDURE Call, email, visit the agency's web site or write for information or service; brochures and copies of database information are available by request. FEES/PAYMENT SOURCE There are no fees for printing reports/articles from the database. There are no fees for information and referral or the organization's brochure.


55 Kenosia Ave.

Danbury , CT 06810 (Physical)

Get directions
Service hours
Monday through Thursday, 8:30am to 7:00pm, Friday, 8:30am to 6:00pm, EST.

Service/Intake and Administration

(203) 744-0100


(800) 999-6673


(203) 263-9938

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