Unique - Rare Chromosome Disorder Support Group

General Organizational Information

Organization Name:

Organization Acronym:

Unique

Year Established:

1984

Mission Statement:

Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Chromosome Anomalies

Organizational Contact Information

Title:

Dr.

Degree:

PhD

First Name:

Beverly

Last Name:

Searle

Address:

PO Box 2189

Caterham, Surrey, CR3 5GN

Phone:

+44 1883 330766

Fax:

+44 1883 330766

Email:

info@rarechromo.org

Website Address:

http://www.rarechromo.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

Spanish

Norwegian

English

Finnish

German

Italian

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Media

Researchers

Other

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer support

Other

Peer-to-peer counseling

Awareness programs

E-mail list

Telephone helpline

Genetic information

Chat room

Other

Educational materials include:

Fact sheet(s)

Magazine

Pamphlet(s)

Booklet(s)

Newsletter

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Professionals

Other

Financial assistance for:

Other