Chromosome 9p- Network

General Organizational Information

Organization Name:

Year Established:

1984

Mission Statement:

We strive to promote the health and welfare of affected families of persons with 9p- Syndrome. We do this through networking, conferences, newsletters and support of research.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Chromosome 9p-

Organizational Contact Information

Title:

President

First Name:

Oney

Last Name:

Reynolds

Address:

PO Box 54

Stanley, ID, 83278

Phone:

+1 210 764 8193

Email:

pduffy006@verizon.net

Website Address:

http://www.9pminus.org

Resources and Services Provided

Languages spoken:

English

German

French

Japanese

Spanish

Printed materials available in:

English

Information provided for:

Health care professionals

Care providers

Families of affected individuals

Teachers

Researchers

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer support

Non-medical services

Genetic testing

E-mail list

Telephone helpline

Genetic information

Speakers

Pen pal program

Genetic counseling

Advocacy

Chat room

Educational materials include:

Fact sheet(s)

Membership directory

Research updates

Newsletter

Bibliography

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers