OTHER SUPPORT ORGANIZATIONS

 

Children's PKU Network (CPN)

3790 Via De La Valle, Suite 116E

Del Mar, CA 92014

Fax 858-509-0768

Phone 858-509-0767

email: PKUnetwork@aol.com

webpage: http://www.pkunetwork.org

 

The Genetic Alliance

(Formerly The Alliance of Genetic Support Groups, Inc.), is an international coalition of individuals, professionals and genetic support organizations working together to enhance the lives of everyone impacted by genetic conditions.

4301 Connecticut Avenue, NW, #404

Washington, DC 20008-2304

(202) 966-5557 FAX: (202) 966-8553 (800) 336-GENE -- Helpline only

e-mail: info@geneticalliance.org

webpage: http://www.geneticalliance.org/

 

National Organization for Rare Disorders

55 Kenosia Avenue

PO Box 1968

Danbury, CT 06813-1968

Phone: 203.744.0100

Fax: 203.798.2291

Website http://www.rarediseases.org

 

National PKU News

6869 Woodlawn Ave. NE #116

Seattle, WA 98115-5469

Editor: Virginia Schuett

Email: schuett@pkunews.org

Phone: 206-525-8140

Fax: 206-525-5023

Webpage: http://web47.radiant.net/~pkunews

(Lots of good information and links to other sites)

 

Rare Genetic Diseases in Children

An Internet jump-station to sources of information on rare genetic diseases affecting children.

(Lots of good information and links to other sites.)

need to update website!!!!!!

http://mcrcr2.med.nyu.edu/murphp01/homenew

 

Save Babies Through Screening

5335 N. Helton Road

Winston, GA 30187

Toll Free: (888) 454-3383

Local: (903) 887-0259

Fax: (770) 947-8507

Email: email@savebabies.org

http://www.savebabies.org

Dedicated to Raising the Awareness of Newborn Screening and Related

Disorders -- Newborn Screening Saves Babies One Foot At A Time

 

 

 

updated February 20, 2006