• Group logo of Advocating for a child with PKU in school
    active 3 weeks, 6 days 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 9 members
  • Group logo of Support Group.
    active 3 weeks, 6 days ago

    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 […]

    Public Group 32 members
  • Group logo of That’s PKU Life!
    active 3 weeks, 6 days 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 21 members
  • Group logo of PKU Cooks
    active 3 weeks, 6 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 77 members
  • Group logo of KUVAN® [sapropterin dihydrochloride] Tablets
    active 1 month, 4 weeks 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 12 members
  • Group logo of Fundraising
    active 2 months ago

    Looking for ways to make an impact for those whose lives are touched by PKU? Visit here often to see what others are doing to improve the lives of individuals with PKU.

    Public Group 7 members
  • Group logo of Financial Assistance for Medical Foods and Formula
    active 2 months 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 11 members
  • Group logo of PKU Global
    active 2 months 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 22 members
  • Group logo of Physically Active PKUers
    active 3 months 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 38 members
  • Group logo of PKU Adult Advocacy
    active 3 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 21 members
  • Group logo of Adults in the Midwest
    active 3 months, 3 weeks ago

    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 […]

    Public Group 34 members
  • Group logo of Late Diagnosed/Treated Adults With PKU
    active 6 months, 3 weeks 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 35 members
  • Group logo of PKU Teen Support Group
    active 6 months, 3 weeks ago

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

    Public Group 48 members
  • Group logo of OLD SCHOOL PKU
    active 6 months, 3 weeks ago


    Public Group 21 members
  • Group logo of The PKU Association of N.S.W, Inc
    active 7 months, 4 weeks ago

    Support group for all people with PKU. We meet 6 times a year. The website is pkunsw.org.au We create awareness We educate We support We network

    Public Group 3 members
  • Group logo of Houston PKU Group
    active 9 months, 1 week ago

    To share support and local PKU information and tips.

    Public Group 8 members
  • Group logo of New York & PKU
    active 10 months, 1 week ago

    If you live in New York State and intersted in connecting with local PKUers and/or families, join this group!

    Public Group 21 members
  • Group logo of WNY PKU Association
    active 10 months, 1 week ago

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

    Public Group 9 members
  • Group logo of HyperPhe
    active 10 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 43 members
  • Group logo of Adult with PKU
    active 11 months, 2 weeks ago

    Adult with PKU Group

    Private Group 16 members