Who We Are

arrow PNG
  • Who we are

    We are a 501(3)c charitable organization. We are a volunteer group of individuals committed to provide support, information, education and advocacy to individuals with PKU and other inborn errors of metabolism.
  • Where We Are

    arrow PNG
  • Where we are

    We are located at:
    2310 Homestead Rd Suite C1, Box 154 Los Altos, CA 94024.

  • History

    arrow PNG
  • History

    Established in 1981, we were known as PKU Parents of California. In 2005, we changed the name to the California Coalition for PKU and Allied Disorders in order to provide support to individuals with genetic IEM’s.
  • Our Mission

    arrow PNG
  • Our Mission

    Our Mission is to provide support to all families living in California who are involved with or affected by PKU and/or Allied Disorders.

    (Click "info" to exit this screen)

  • Info

    Welcome

    to the California Coalition for PKU and Allied Disorders (CCPKUAD)
    teaser image

    24

    May
    2018

     

    Schedule In-District Meetings NOW!
    Members of Congress will be working locally May 28 – June 1. Please schedule a meeting
    with them in your home state to discuss the Medical Nutrition Equity Act (Senate Bill:
    S. 1194 and House Bill: H.R. 2587). Asking for their support and co-sponsorship
    locally is KEY. Did you know Senator Grassley agreed to co-lead the MNEA with Senator
    Casey after a local meeting with two PKU grandparents? He did! Local meetings make a
    difference. Don’t delay, WE NEED YOUR HELP!
    Scheduling a meeting is easy! Check out the NPKUA Medical Nutrition Equity Act page for
    step-by-step instructions. You can also go directly to our phone scripts by selecting the links below.
    YOU CAN DO IT!
    Help the NPKUA keep a pulse on advocacy activities across the country. Please email 
    katrina.swenson@npkua.org to let us know about your appointments. We can also
    connect you with other advocates in your area!
    What do I do if I’m told my Representative or Senators do not have appointments
    available?
    Let the scheduler know this issue is very important to you and you would like to meet with a local
    staff member responsible for healthcare legislation in the next several weeks.
    Need more bill info and materials to share with your U.S. Representative and Senators? Visit the
    Have questions? We have answers! Email us!
    About the Medical Nutrition Equity Act
    If passed by Congress and signed into law, the MNEA would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs to provide coverage for formulas, low protein modified foods, and prescribed vitamins for all children and adults with inborn errors of metabolism and certain digestive disorders.
    Thank you for your participation!
    National PKU Alliance, Inc. |  P.O. Box 1872 | Eau Claire, WI 54702
    Like us on Facebook    Follow us on Twitter    View our videos on YouTube    View on Instagram

    Leave a Reply

    Your email address will not be published. Required fields are marked *

    CCPKUAD is a 501(3)c non-profit organization. We are a volunteer group of individuals committed to provide support, information, education and advocacy to individuals with PKU and other inborn errors of metabolism.
    We became an organization in 1981 formed by parents and our group was formerly known as PKU Parents of California.
    In 2005 we changed the name to the California Coalition for PKU and Allied Disorders in order to provide support for other individuals with genetic IEMs. After a 4 year period of inactivity, the current group of officers resurrected the group in an effort to bring together this community and provide a much needed organization in California.
    WE WANT TO HEAR FROM YOU! Please click on the icons below to send us an e-mail, follow us on Twitter, and "like" us on Facebook!

    Add Us

    Email UsFacebookTwitter

    © 2010 CCPKUAD
    Theme: GC02 by GlossyCat