• Group logo of Houston PKU Group
    active 2 days ago

    To share support and local PKU information and tips.

    Public Group 2 members
  • Group logo of PKU in Florida
    active 5 days ago

    A place to connect with other people (patients, parents, friends) in Florida who are affected by PKU.

    Public Group 1 member
  • Group logo of KUVAN® [sapropterin dihydrochloride] Tablets
    active 5 days, 1 hour ago

    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 […]

    Public Group 4 members
  • Group logo of Late Diagnosed/Treated Adults With PKU
    active 1 week, 4 days ago

    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?

    Public Group 31 members
  • Group logo of PKU Cooks
    active 1 week, 4 days ago

    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

    Public Group 60 members
  • Group logo of WNY PKU Association
    active 3 weeks, 3 days ago

    A group focused on connecting patients with PKU in the Western New York area.

    Public Group 1 member
  • Group logo of PKU Teen Support Group
    active 1 month ago

    A group for teens seeking help with their diets, friendships, teen to teen support, ect.

    Public Group 43 members
  • Group logo of PKU Education Seekers
    active 1 month, 2 weeks ago

    People who want to learn about PKU and share their knowledge with others!

    Private Group 1 member
  • Group logo of Advocating for a child with PKU in school
    active 2 months, 3 weeks ago

    For advice and suggestions on how you can help a child with PKU transition easily to a school setting, check us out.

    Public Group 5 members
  • Group logo of That’s PKU Life!
    active 2 months, 4 weeks ago

    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 […]

    Public Group 7 members
  • Group logo of Financial Assistance for Medical Foods and Formula
    active 4 months, 1 week ago

    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 […]

    Public Group 3 members
  • Group logo of Parent of an infant with PKU
    active 4 months, 2 weeks ago

    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, […]

    Private Group 7 members
  • Group logo of OLD SCHOOL PKU
    active 4 months, 2 weeks ago


    Public Group 11 members
  • Group logo of Physically Active PKUers
    active 4 months, 2 weeks ago

    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 […]

    Public Group 25 members
  • Group logo of HyperPhe
    active 4 months, 2 weeks ago

    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.

    Public Group 35 members
  • Group logo of PKU Global
    active 4 months, 3 weeks ago

    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 […]

    Public Group 13 members
  • Group logo of pku holmies
    active 5 months ago

    just people talk about there lives

    Public Group 2 members
  • Group logo of Young Adult with PKU
    active 5 months ago

    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.

    Private Group 3 members
  • Group logo of Friends of Patient Power
    active 5 months ago

    provides insights and up dates to patient education programs posted on http://www.patientpower.info/pku

    Public Group 34 members
  • Group logo of PKU Adult Advocacy
    active 5 months ago

    Lobbying politicians for improve care, healthcare card, more treatment and low protein food choices better education. Improve life for the person with PKU

    Public Group 12 members