Who We Are

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  • 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

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  • Where we are

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

  • History

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  • 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

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  • 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.

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  • Info

    Welcome

    to the California Coalition for PKU and Allied Disorders (CCPKUAD)
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    20

    May
    2023
    0

    As you hopefully remember, we are once again holding two CCPKUAD FamilyDays this summer – one in Southern California on June 10 and one in Northern California on June 24. Registration is still open, but will close June 1. There is no cost, but space may be limited so register now!

    Here’s an update on the events:

    • So far, we have the following sponsors confirmed: Ajinomoto Cambrooke, BioMarin, Codexis, Nexus Patient Services, PKU Perspectives, Relief Therapeutics, Synlogic (Thank You!)
    • For the Northern California event, we will once again have a (free to attendees) Dole Whip machine
    • For the Southern California event, we will once again have a (free to attendees) Fruit Cart Vendor. We also have 3 Bocce courts adjacent to our picnic area reserved.
    • Both events will feature a 30-45 minute program right before lunch.

    If you can’t remember if you’ve already registered, please send us an email at ccpkuad@gmail.com and we’ll check.

    See the flyer below for all the details, but for convenience, here is the registration link:
    https://tinyurl.com/2undzz4y

    We hope to see you in June!

    1

    March
    2020

    Friends of CCPKUAD, please see the attached Instagram picture from howmuchphe.

    Support the Medical Foods Equity Act by going to NutritionEquity.org and taking action! If you are on Instagram, consider following howmuchphe!

    11

    November
    2019

    To learn about exciting research please see the flyer below and click SURVEY below to participate!

    SURVEY

    1

    April
    2019

    THE 11th ANNUAL CCPKUAD FAMILY DAY PICNIC, FUNDRAISER AND MEMBERSHIP DRIVE!

    SATURDAY, June 15, 2019

    10:30 am – 2:00 pm

    Foothill College Dining Room
    12345 El Monte Rd
    Los Altos Hills, CA

    Bring your friends and family! Come enjoy the fun, vendors, face painting, an educational speaker, food, iPad raffle, arts and crafts for the kids, free takeaway for each family and more! (But you must register!)

    FREE Regular and low protein lunch will be served!

    Please bring any unloved unopened low protein food for our Food Swap table!

    **NEW: If your PKU/Allied Disorder patient would like to display any artwork, please email Diane for details (CCPKUAD@gmail.com)

    Register online at https://forms.gle/ZPmUqQoRavq2SQLn9 OR by using coupon below

    *YOU MUST PRE-REGISTER: Please mail response to:

    CCPKUAD 2310 Homestead Rd
    Suite C1 Box 154
    Los Altos, CA 94024

    Event registration begins April 1, 2019! Questions?
    Contact Diane at CCPKUAD@gmail.com

    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!

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