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Phenylketonuria (PKU) (cont.)

IN THIS ARTICLE

FAQs

Learning about phenylketonuria (PKU):

Being diagnosed:

Getting treatment:

Other Places To Get Help

Organizations

Children's PKU Network
3306 Bumann Road
Encinitas, CA 92024
Phone: (858) 756-0079
Fax: (858) 756-1059
Email: pkunetwork@aol.com
Web Address: www.pkunetwork.org

The Children's PKU Network is a nonprofit organization that offers resources and support for people who have phenylketonuria.


Genetics Home Reference, U.S. National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
Phone: 1-888-FIND-NLM (1-888-346-3656)
Fax: (301) 402-1384
TDD: 1-800-735-2258
Web Address: www.ghr.nlm.nih.gov

The Genetics Home Reference provides information on hundreds of genetic conditions. The website has many tools for learning about human genetics and the way genetic changes can cause disease. It also has links to additional resources for people who have genetic conditions and for their families.


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 website has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care.


National Institute of Child Health and Human Development
P.O. Box 3006
Rockville, MD 20847
Phone: 1-800-370-2943
Fax: 1-866-760-5947 toll-free
TDD: 1-888-320-6942
Email: NICHDInformationResourceCenter@mail.nih.gov
Web Address: www.nichd.nih.gov

The National Institute of Child Health and Human Development (NICHD) is part of the U.S. National Institutes of Health. The NICHD conducts and supports research related to the health of children, adults, and families. NICHD has information on its Web site about many health topics. And you can send specific requests to information specialists.


National PKU News
6869 Woodlawn Avenue NE
Suite 116
Seattle, WA 98115
Email: schuett@pkunews.org
Web Address: www.pkunews.org

This organization creates a newsletter and develops other materials (such as diet information and recipes) for people with phenylketonuria (PKU) and for their families. The website includes treatment and support group information, an email discussion group, and links to related websites.


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