Searching for Pku Support L Archives information? Find all needed info by using official links provided below.
http://www.listserv.emory.edu/Archives/pku-support-l.html
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Phenylketonuria (PKU) information. PKU isn’t just a diet thing; it’s a brain thing. Best ways to care for your child with PKU. Protect a developing brain from high blood phenylalanine (Phe) levels. PKU can impact how you think, feel, act, and function. High or unstable blood Phe levels can be managed and improved.
https://rarediseases.org/organizations/national-pku-alliance/
Description The National PKU Alliance is a voluntary, non-profit organization whose mission is to improve the lives of individuals and families associated with PKU through research, support, education and advocacy, while ultimately seeking a cure.
The National PKU Alliance (NPKUA) is a vital voice for the PKU community. We work towards expanding PKU research and accelerating the timeline for a cure by investing in peer-reviewed and targeted research. We provide education and support to people living with PKU.
https://pkunews.org/support/
National PKU News is a 501(c)(3) non-profit organization. All donations are tax-deductible to the fullest extent allowed by law. We rely on the support of the PKU Community, and, because our numbers are so small, their friends and family, to continue our work.
https://www.npkua.org/Resources/Adults-with-PKU
www.Adultswithpku.org is the virtual home for the National PKU Alliance's Teen and Adult Program. It provides the latest information on current therapies, how to manage PKU as a teen and adult, a platform to connect with others from the PKU community and a place to reach out and find support.
https://www.pku.com/community-and-support/resources
Phenylketonuria (PKU) resources and advocacy groups. The American College of Medical Genetics and Genomics (ACMG) guidelines. Blood phenylalanine (Phe) control questionnaire. Methods for tracking Phe. Collect blood Phe at home. PKU care team contact sheet. PKU clinic discussion guide. PKU pantry table. National PKU Alliance (NPKUA). PKU toolkit.
http://pkunetwork.org/links.html
National Coalition for PKU and Allied Disorders: www.pku-allieddisorders.org National Newborn Screening and Genetic Resource Center: www.genes-r-us.uthscsa.edu National Organization of Rare Disorders (NORD): www.rarediseases.org
https://www.dailystrength.org/group/phenylketonuria-pku
Phenylketonuria (PKU) Support Group. Phenylketonuria [PKU] is a human genetic disorder, in which the body lacks phenylalanine hydroxylase, the enzyme necessary to metabolize phenylalanine to tyrosine. Left untreated, the disorder can cause brain damage and progressive mental retardation as a result of the accumulation of phenylalanine and its ...
https://www.thinkgenetic.com/diseases/phenylketonuria/organizations/17662
There are several support groups for people with phenylketonuria. The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure. The Children's PKU Network was founded in 1991 to address the special needs and concerns of individuals and families with PKU.
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