High-quality healthcare for adults with PKU must be a priority, just as it is for children with PKU

gregor.hammerschmidtAnnouncements, PKUDay

“The fact that the benefits from PKU treatment in childhood are ‘clear and immediate’ does not equate that there are no benefits for PKU treatment in adulthood” On June 28th PKU community celebrates International PKU Day. This year, E.S.PKU decided to raise awareness of adults with PKU by running a successful campaign “The Life of adults with PKU”. Throughout June on E.S.PKU social media various statements were published about the challenges of adults with Phenylketonuria.  Since Phenylketonuria (PKU) is diagnosed in the early stages of life (nowadays in newborn screening), it has traditionally been perceived as a childhood disease. The …

PKU DAY 2024: E.S.PKU advocates for all, not just children


‘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 …

EU CPA on PKU and ESPKU join to launch a new campaign

gregor.hammerschmidtCross Party Alliance

International PKU Day: European Parliament Cross-Party Alliance on PKU and ESPKU jointly launch campaign to ensure all rare disease patients continue to benefit from future innovation Today, International PKU Day, marks the launch of an advocacy campaign to ensure that the foreseen revision of the EU Orphan Medicinal Products (OMP) Regulation will continue to benefit all people living with rare diseases, including Phenylketonuria (PKU). This campaign is led by the European Parliament Cross-Party Alliance on PKU and the European Society for Phenylketonuria (ESPKU)[1]. Prior to the existence of the OMP Regulation, only 8 medicinal products were available for patients living …

The forgotten children


A touching documentary by the German Association for Phenylketonuria and allied inherited disorders (DIG PKU) calls attention to the fate of late diagnosed and untreated patients Phenylketonuria (PKU) is a rare, inherited disorder of protein metabolism. Patients are unable to metabolise the amino acid phenylalanine. Early diagnosed by newborn screening and treated with a low protein diet and an  amino acid substitution, patients can develop normally and live their life to the full. In untreated patients, high phenylalanine-levels in the brain cause severe impairments to mental and physical development. Neurological abnormalities such as hyperactivity, aggressiveness and lack of concentration, fitting …

#GuthrieMemorialDinner – June 28th – PKUDay


International PKU Day is happening on June 28th. Spreading the word about Phenylketonuria is very important to achieve our goals. As we have announced in our last news post we have launched a dedicated website for the International PKU Day. It’s available at www.pkuday.org. For this year there is a special event planned as it’s the 100th anniversary of Robert Guthrie birth. The #GuthrieMemorialDinner is a special occasion and an easy way to show your support for Phenylketonuria. Learn more about the idea: To identify PKU babies affected by Phenylketonuria immediately after birth, Robert Guthrie invented the possibility for newborn screening, also known …

PKU Day Website launched


We are happy to announce the launch of the new PKUDay.org website. PKU Day is coming up June 28th. For this year we have planned some special events and hope that everybody will take part in. Spreading the word about Phenylketonuria (PKU) is important. International PKU Day gives us the chance to promote PKU and make it known better. Please help by sharing the website and social media accounts of International PKU Day. The biggest event for this year will be the “Robert Guthrie Memorial Dinner”. Read all about it on the PKUDay Website.

Rare Disease Day Logo

E.S.PKU on Rare Disease Day 2016


Today, February 29th, it’s Rare Disease Day 2016! #PKU #RareDiseaseDay Metabolic Disorders, such as Phenylketonuria, is a rare disease. Help raise awareness for PKU so that people understand our situation better. You may want to check the official website for the rare disease day in order to find out what’s happening in your town! We want to share this video by Kevin Alexander to you, showing an inspiring PKU story. Also don’t forget to prepare yourself for June 28th – International PKU Day. Raising more awareness for Phenylketonuria is essential to achieve a better quality of life. To see why that is …

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Rare Disease Day 2016 – Get Active


Rare Disease Day 2016 is held on the last day of February. This means it’s on the 29th of February 2016. As Phenylketonuria is one of those rare diseases it’s important to honor this day and remember others about the existence of rare diseases. It’s important you get active yourself. Visit the official Rare Disease Day Website, or your local Rare Disease organization, for more information. We also want to share with you the official Video for the Rare Disease Day 2016. If you have a moment more to spare we also want to point you to the PKU Day. PKU …