Phenylketonuria (PKU)

Other Places To Get Help

Organizations

Canadian Organization for Rare Disorders
151 Bloor Street West
Suite 600
Toronto, ON  M5S 1S4
Phone:	1-877-302-7273 toll-free (416) 969-7464
Web Address:	www.cord.ca
The Canadian Organization for Rare Disorders (CORD) provides information on over 6,000 rare conditions. Through a network system, CORD links together individuals and families with the same rare disorder.
Canadian Society for Metabolic Disease
P.O. Box 64606
Coquitlam, BC  V3J 7V7
E-mail:	info@csmd.ca
The Canadian Society for Metabolic Disease (CSMD) provides information and support for persons suffering from a metabolic disease.
Children's PKU Network
3790 Via De La Valle
Suite 120
Del Mar, CA  92014
Phone:	1-800-377-6677 (858) 509-0767
Fax:	(858) 509-0768
E-mail:	pkunetwork@aol.com
Web Address:	www.pkunetwork.org
The Children's PKU Network is a nonprofit organization that offers networking services, resources, a hotline, and family support.
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY  10605
Phone:	(914) 997-4488
Web Address:	www.marchofdimes.com
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's Web site has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care. You can sign up to get a free newsletter and also explore Understanding Your Newborn: An Interactive Program for New Parents.
National PKU News
6869 Woodlawn Avenue NE
Suite 116
Seattle, WA  98115-5469
E-mail:	schuett@pkunews.org
Web Address:	www.pkunews.org
This organization publishes a newsletter, maintains a Web site, and develops other PKU-related material (such as diet information and recipes) for people with PKU and for their families. Their Web site has news and information about PKU, including information on therapies, a PKU e-mail discussion group, and links to other PKU-related Web sites.
PKU Canada Inc. Family Association–Hospital for Sick Children
555 University Avenue
Toronto, ON  M5G 1X8
Phone:	(416) 813-6356
Fax:	(416) 813-5345
This organization provides support services to families and children dealing with PKU.

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Author:	Debby Golonka, MPH Ralph Poore	Last Updated: April 15, 2008
Medical Review:	Anne C. Poinier, MD - Internal Medicine Michael J. Sexton, MD - Pediatrics Thomas Emmett Francoeur, MDCM, CSPQ, FRCPC - Pediatrics
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