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Find Support
The following online resources provide lots of important information about PKU and how it's managed.
Sponsored by BioMarin, PKU.com is your connection to basic information, tips, and aids to help with PKU management, and to the diverse online PKU community. Create a free account for exclusive features and content such as discussion forums, customized recipes, a personalized message in-box, and more.
The National Organization for Rare Disorders (NORD), Inc. is a federation of health organizations, patients, healthcare providers, and individuals. NORD helps eligible patients – those with medical and financial needs – afford the medications and treatment their healthcare professionals have prescribed. NORD is dedicated to helping people with rare "orphan" diseases and to assisting the organizations that serve them. NORD is committed to improving the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
This non-profit organization provides the latest PKU news and information to people affected by PKU and their families.
background information on PKU.
The goal of the STAR-G project is to examine the financial, ethical, legal, and social issues posed by the use of tandem mass spectrometry in newborn screening. It explains about genetics, how screening with mass spectrometry is performed, and specific background information on PKU.
A non-profit organization that promotes better health and well-being in individuals with PKU and related metabolic disorders by providing information and facilitating the exchange of ideas within the PKU community.
This non-profit organization is devoted to addressing the unique needs of children with PKU and their families by promoting awareness and by providing education and assistance programs.
The purpose of this non-profit organization is to bring together individuals, metabolic support groups, and professionals across America who are directly involved with issues related to inborn errors of metabolism requiring a low-protein diet, including PKU and other related metabolic disorders, to improve identification, treatment, and management of these disorders.
The Mayo Clinic is a not-for-profit medical practice devoted to the treatment of complex illnesses. The Web site, MayoClinic.com, provides an overview of PKU, including topics such as treatment, prevention, self-care, and coping skills.
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Start a conversation by sending a single e-mail. Write what's on your mind, send it off, and let the discussion begin!
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This site provides links to resources and information on PKU, PKU symptoms, and DNA tests.
PKU knows no boundaries. Find out where people with PKU live; you can also find a pen-pal with PKU in your state or in another country. A thorough history of the discovery of PKU is also presented.
The state of Michigan's Web site provides PKU screening information for newborns.
The PKU Organization of Illinois Web site features a broad range of PKU information, including clinics and product suppliers.
The Newborn Screening Case Management Program of Texas provides customer-oriented, high-quality newborn screening follow-up, case management, and outreach education. It has a section about PKU for parents and provides a Spanish translation as well.
Taste Connections specializes in low-protein products, such as bread mix and multibaking mix, that are suitable for patients with PKU or homocystinuria (HCU). The recipes were created by the mother of a patient with HCU who has a master's degree in Nutritional Science and who presents workshops on low-protein cooking.
Started by the same woman who started Taste Connections, this site provides more low-protein food recipes for persons with HCU, PKU, methylmalonic acidemia (MMA), and tyrosinemia.
Based in Toronto, Ontario, this non-profit organization is dedicated to providing up-to-date, accurate news and information to families and professionals dealing with phenylketonuria.
The National PKU Alliance works to improve the lives of individuals and families associated with PKU through research, support, education and advocacy, while ultimately seeking a cure. The NPKUA is the first national non-profit organization to unite adults, families, statewide organizations, the medical community and PKU-friendly businesses under one umbrella organization.
Patient Power is a series of online radio and video programs for patients hosted by Andrew Schorr, a 13-year Leukemia survivor and patient advocate. The programs feature renowned medical experts and inspiring patients discussing an array of chronic medical conditions including PKU. The end goal is patient empowerment.
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The PKU Listserv is a great place for families of a child with PKU, persons with PKU, and professionals involved in PKU treatment to share their ideas and concerns with others. This list provides an easy way for people all over the world to come together and communicate with one another about PKU. If you are interested in joining the listserv, send an email request including your name and email address to:
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NATIONAL PKU ALLIANCE PARTNER ORGANIZATIONS
ARIZONA
Arizona PKU — www.arizonapku.org
Contact: Mark Stanley,
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CALIFORNIA
Children's PKU Network — www.pkunetwork.org
3790 Via de la Valle # 120 Del Mar, CA 92014
Contact: Rhonda Connolly,
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CONNECTICUT
New England Connection for PKU and Allied Disorders (NECPAD) — www.necpad.org
P.O. Box 3235 Woburn, MA 01888-2135
Contact: Rachel Kaup,
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DELAWARE
The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD)— www.macpad.org
P.O. Box 6086 Lancaster, PA 17607-6086
Contact: Judy Griffith,
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FLORIDA
Florida PKU Foundation — www.floridapku.org
Contact: David Donatucci,
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GEORGIA
Georgia PKU Connect — www.GeorgiaPKU.org
3300 Hamilton Mill Road #102-120 Buford, GA 30519
Contact: Kristen Vanags, Jennifer Anderson Lee, and Julie Cheek,
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IDAHO
Intermountain PKU and Allied Disorders Association
P.O. Box 9762 Salt Lake City, UT 84109
Contact: Amy Oliver,
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ILLINOIS
PKU Organization of Illinois — www.pkuil.org
P.O. Box 102 Palatine, IL 60078
Contact: Julie Kelly,
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INDIANA
Indiana PKU and Allied Disorders Association
www.indianapku.org
P.O. Box 28 Carmel, IN 46082
Contact: Michael Franklin,
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IOWA
Iowa PKU Foundation
www.iowapkufoundation.com
P.O. Box 220 Des Moines, IA 50301-0220
Contact: Blythe Stanfel,
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MARYLAND
Maryland Alliance of PKU Families
http:mapkuf.blogspot.com
2028 Conan Doyle Way, Eldersburg, MD 21784
Contact: Rob Kerr,
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The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD) — www.macpad.org
P.O. Box 6086 Lancaster, PA 17607-6086
Contact: Sharon Johnstone,
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MAINE
New England Connection for PKU and Allied Disorders (NECPAD) — www.necpad.org
P.O. Box 3235 Woburn, MA 01888-2135
Contact: Rachel Kaup,
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MASSACHUSSETTS
New England Connection for PKU and Allied Disorders (NECPAD) — www.necpad.org
P.O. Box 3235 Woburn, MA 01888-2135
Contact: Rachel Kaup,
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MICHIGAN
Michigan PKU and Associated Disorders
www.michigan-pku.org
3062 E. Lois Midland, MI 48640
Contact: Sandy LaPrad,
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MINNESOTA
Minnesota PKU Foundation — www.mnpku.org
A Place of Our Own
1397 Arden Oaks Drive Saint Paul, MN 55112
Contact: Tanya Drake,
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MISSOURI
Missouri PKU Group
Contact: Patty Van Norman,
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NEVADA
Intermountain PKU and Allied Disorders Association
P.O. Box 9762 Salt Lake City, UT 84109
Contact: Amy Oliver,
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NEW HAMPSHIRE
New England Connection for PKU and Allied Disorders (NECPAD) — www.necpad.org
P.O. Box 3235 Woburn, MA 01888-2135
Contact: Rachel Kaup,
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NEW JERSEY
The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD) — www.macpad.org
P.O. Box 6086 Lancaster, PA 17607-6086
Contact: Sharon Johnstone,
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NEW YORK
The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD) — www.macpad.org
P.O. Box 6086 Lancaster, PA 17607-6086
Contact: Sharon Johnstone,
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OHIO
The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD) — www.macpad.org
P.O. Box 6086 Lancaster, PA 17607-6086
Contact: Sharon Johnstone,
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PENNSYLVANIA
The Mid-Atlantic Connection for PKU and Allied Disorders (MACPAD) — www.macpad.org
P.O. Box 6086 Lancaster, PA 17607-6086
Contact: Sharon Johnstone,
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RHODE ISLAND
New England Connection for PKU and Allied Disorders (NECPAD) — www.necpad.org
P.O. Box 3235 Woburn, MA 01888-2135
Contact: Rachel Kaup,
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TENNESSEE
Tennessee PKU Foundation
www.tennesseepku.org
5468 Sabin Court Murfreesboro, TN 37128
Contact: Kellye McDowell,
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TEXAS
North Texas PKU Association — www.ntxpku.org
325 S. Juniper Road #838 Allen, TX 75002
Contact: Kelly McDonald,
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UTAH
Intermountain PKU and Allied Disorders Association
P.O. Box 9762 Salt Lake City, UT 84109
Contact: Amy Oliver,
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VERMONT
New England Connection for PKU and Allied Disorders (NECPAD) — www.necpad.org
P.O. Box 3235 Woburn, MA 01888-2135
Contact: Rachel Kaup,
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VIRGINIA
Ryans PKU Foundation www.ryanspkufoundation.org
2127 Kingsley Lane Chesapeake, VA 23323
Contact: Mike Foust,
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PKU Pursuits, Inc.
www.pkupursuits.org
PO Box 6739, Falls Church, VA 22040
Contact: Hollon Stevens,
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WYOMING
WyoMed Campaign Organization
www.wyomedcampaign.org
P.O. Box 343 Meeteetse, WY 82433
Contact: Kenneth Allen,
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OTHER PKU ORGANIZATIONS
NEW YORK
Inherited Metabolic Disorders Support Group
of Suffolk County
80 Picket Lane Centereach, NY 11720-2511
Contact: Ann Marie DiGeorgio,
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OKLAHOMA
Oklahoma PKU Support Group
35860 Cherry Hill Road Asher, OK 74826
Contact: Theresa Beverage,
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OREGON
Oregon PKU Support Group
Contact: Jennifer Jones,
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WISCONSIN
PKU and Allied Disorders of Wisconsin
www.padow.org
6285 Schumacher Road Waunakee, WI 53597
Contact: Stephanie Stremer,
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