Welcome! Join the PKU Community and connect with others like you to gain and give support, encouragement, motivation, and helpful information.
A gathering place for those of us with PKU to hang out, chat about the diet, trade recipes, offer food alternatives… and other general things involved with food
If you live in New York State and intersted in connecting with local PKUers and/or families, join this group!
A group focused on connecting patients with PKU in the Western New York area.
For advice and suggestions on how you can help a child with PKU transition easily to a school setting, check us out.
A place for non-classic PKU-ers to connect, though everyone is welcome! =). If you have HyperPhe or are a parent of a HyperPhe child join here to connect with other people dealing with HyperPhe.
I want to help people that are affect by PKU. Parents, children, teenagers and young adults. I never had anyone to talk to about my PKU and to have some one to talk to that understands were I was coming from would […]
Adult with PKU Group
PKU Global is on a World Wide Search & Rescue of PKU Adults and PKU Parents… We connect PKUers all around the world.. and have located about 3200 Worldwide in Three years.. We also house the first ever National […]
A place to connect with other people (patients, parents, friends) in Florida who are affected by PKU.
This is a group targeted for adults living with PKU in the Midwest area. We would like to create a space for adults with PKU to network with one another and share their own thoughts and ideas related to adult life […]
TO DISCUSS YOUR PERSONIAL STRUGGLE THROUGH OUT YOUR LIFE. YOUR TRIUMPHS AND YOUR FAILUARS. AND DISCUSS HOW THINGS HAVE CHANGED OVER TIME WE WILL MEET 1 TIME A MONTH.AT 3PM.ON SATURDAYS
Sometimes you have something to share that only someone with PKU can appreciate. Here is a discussion group where you can talk about anything related to PKU and health. Connect with others who can offer […]
Those of us who were diagnosed with PKU late-treated/untreated-How are you coping with it today? How has it affected you/your family’s life?
WELCOME!!!! As I am sure you all know I strongly advocate exercise. This disease is not a curse in my eyes. We are unique not only in the lack of ability our bodies share, but in the resources we share. Who else […]
Share information and gather tips on how those with medical and financial needs can afford medical foods and formula.
There are programs that help pay insurance premiums, deductible,s and copayments associated […]
KUVAN® (sapropterin dihydrochloride) Tablets is the only FDA-approved prescription medicine for the treatment of PKU. KUVAN, used along with diet, can help some people with PKU reduce blood Phe levels more than […]
A group for teens seeking help with their diets, friendships, teen to teen support, ect.
To share support and local PKU information and tips.
Lobbying politicians for improve care, healthcare card, more treatment and low protein food choices better education. Improve life for the person with PKU
provides insights and up dates to patient education programs posted on http://www.patientpower.info/pku
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