International PKU Day 2017

This site uses cookies. By continuing to browse this site, you are agreeing to our Cookie Policy.

  • International PKU Day you say? Didn't we just have an entire PKU awareness month...? Indeed, May was PKU awareness month, but apparently, June 28th has been International PKU Day since 2013!

    International PKU Day was an idea born by the E.S.PKU (European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria). Inspired by the idea of the Rare Disease Day, which takes place every year, but focuses on a wide variety of diseases, PKU Day marks a special day for Phenylketonuria each year.

    Why June 28th?
    • Robert Guthrie was born June 28th, 1916. He invented the possibility for newborn screening. This test is also known as the “Guthrie test”.
    • Horst Bickel was born June 28th, 1918. He was first to develeop a low-protein diet for PKU and establish screening in Germany.


    Stuck for ideas of what to do on June 28th? Have a look at what events are going on worldwide here (there's a possibility to add events on the page too):

    pkuday.org/about/pku-day-2017/



    I feel very honored to have been invited by Biomarin (Kuvan, PegPal) to give a talk at their London office about my own journey with PKU. And if that wasn't enough, NSPKU has invited me to their event at the House of Commons in London later that day (nspku.org/events/event/international-pku-day-2017)! I'll be sure to post some kind of update about both events when I can :) In the mean time.. what is everybody else doing for International PKU Day? Comment below!

    All the best,
    Denise

    1,060 times read