Welcome! Join the PKU Community and connect with others like you to gain and give support, encouragement, motivation, and helpful information.
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 […]
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?
To share support and local PKU information and tips.
A place to connect with other people (patients, parents, friends) in Florida who are affected by PKU.
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
A group focused on connecting patients with PKU in the Western New York area.
A group for teens seeking help with their diets, friendships, teen to teen support, ect.
People who want to learn about PKU and share their knowledge with others!
For advice and suggestions on how you can help a child with PKU transition easily to a school setting, check us out.
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 […]
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 […]
As the parent of a newborn with PKU, you know you need to learn more—from the basics you need to know today to how to help your child with PKU thrive in the future. Join in and find others ready to offer support, […]
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
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 […]
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.
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 […]
just people talk about there lives
Just like your friends, you may find getting older brings a whole new set of challenges. Get help on career, dating, relationships, travel, living on your own…and managing your PKU on top of it all.
provides insights and up dates to patient education programs posted on http://www.patientpower.info/pku
Lobbying politicians for improve care, healthcare card, more treatment and low protein food choices better education. Improve life for the person with PKU
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