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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://www.pku.com/community-and-support/pku-community-old
Join our phenylketonuria (PKU) community on Facebook. Watch how others manage their PKU. PKU twitter. Build a circle of support with others who understand life with PKU.
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 breakdown products.
https://www.thinkgenetic.com/diseases/phenylketonuria/organizations/17662
Some states even have their own state PKU support group. One example of a state level support group is Georgia PKU Connect which is dedicated to Georgia's Phenylketonuria (PKU) community with a mission to connect PKU families and individuals with the support and resources they need to manage PKU and live healthy, productive lives.
https://www.kuvan.com/support-resources/
PKU Support and Resources Patient Assistance and Educational Materials. BioMarin is committed to providing programs and resources to help support people with PKU and caregivers along their journeys with PKU. PKU.com—Join the PKU Community. PKU.com is an informative online resource for people living with PKU. Information about PKU and how it ...
https://rarediseases.org/organizations/childrens-pku-network/
The network serves as a central operational base to assist in the gathering and dissemination of information on PKU and other related disorders, operates a national network hotline to provide PKU families with information about PKU clinics and support groups in their area, seeks to educate legislators concerning the needs of PKU families, and establishes programs for college scholarships, …
https://www.facebook.com/groups/PKUworldwidesupport/
This group is for support of Phenylketonuria This is a support group for friends , families, parents, patients, medical professionals, Low protein food and formula companies that are dealing with PKU.
https://www.pkuconnect.com.au/what-is-pku/pku-support-groups/
PKU Support Groups Get to know your Metabolic Community! Follow the links below to find out more about these PKU support groups. Metabolic Dietary Disorders Association of Australia (MDDA)
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