‘You’re dead if you aim only at kids. Adults are kids grown up anyways.’[1]
Every year, June 28th is celebrated in the PKU Community as it is International PKU Day. The popularity of this day is increasing every year. For 2024, the E.S.PKU has decided to use this day to raise awareness about the lives of adults with Phenylketonuria.
In 2013 in Antwerp E.S.PKU delegates decided to initiate a day to raise awareness about Phenylketonuria. They decided that International PKU Day would be celebrated on June 28th every year. This day is also a celebration of the legacy of two pioneers in PKU Robert Guthrie and Horst Bickel. For many years, patient organizations, initially in Europe and now all over the world, have been celebrating this holiday, often using it for their advocacy, educational and support activities for patients with Phenylketonuria.
Every year, E.S.PKU organizes a conference that brings together not only delegates, scientists and industry representatives, but also patients. They come from different countries. These countries offer different methods of therapy and the care for patients with PKU is organized differently. During these meetings and on social media, there are more and more voices of adult PKU patients who describe the realities of life with PKU in their countries, share problems and support each other. Many of them feel unseen and unheard.
As part of this year’s celebration of the International PKU Day, the E.S.PKU decided to conduct a campaign aimed at raising awareness among the PKU community about the lives of adults with Phenylketonuria. The ‘The Life of adults with PKU’ campaign will start on June 1st and will last until June 28th. During this time, graphics about the ups and downs of life of adults with Phenylketonuria will be published on E.S.PKU social media (Facebook, Instagram, Linkedin). On June 28, a statement summarizing the campaign and regarding the lives of adults with PKU will be published on the official website of E.S.PKU www.espku.org.
We invite everyone to be part of the ‘Life of adults with PKU’ campaign by sharing our publications on your social media with the official hashtags #PKUDAY2024 and #adultPKUawareness
We also encourage all adults with Phenylketonuria to share their experiences of living with Phenylketonuria and adding hashtags #PKUDAY2024 and #adultPKUawareness. Each of you can inspire someone who needs support or help with your story.
[1]Quote by Walt Dinsey https://www.facebook.com/DisneyInstitute