Shameless plug alert!!

OK so before giving you a little update on what I got up to during #InternationalPKUday last month (my next blog) I am posting this very brief call for (German!) participants:


Freiwillige (18+) gesucht für Online Studie zu kognitiver Funktionsfähigkeit bei Erwachsenen mit PKU (2x ±15 Minuten). Durch Ihre Teilnahme an dieser Studie haben Sie die Möglichkeit einen von 50… [Read More]

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… [Read More]

Hi all,

I am SO sorry I haven't posted anything on here in ages! My aim was to keep you posted on the progress of my PhD research as well as other developments and research in PKU, but as I am so keen to do research in this area, I am currently involved in 4 projects, doing some consultancy related to PKU on top of this and - as if that wasn't enough - I have recently been doing some work in my… [Read More]

Hi all,

First of all, my apologies for the delay in writing a new blog. It has been crazy busy since the NSPKU (UK PKU patient association) conference in March. I met a lot of interesting people at the conference and I have been working hard on several very interesting PKU-related research projects since!

In my last (first) blog, I promised I would give you an update about the NSPKU conference,… [Read More]

Hi all,

I was planning on posting my first blog post later this week, but seeing it's Rare Disease Day today, I figured I shouldn't wait!

This is just a quick post to introduce myself. So here it goes:


My name is Denise. I am an adult PKU patient from the Netherlands. I love cooking (and food.. who doesn't?!), being active (running, cycling, spin classes, insanity, going for a hike etc.),… [Read More]

this text reach us from Croatia:

Anja Kladar wrote:

To Whom it may concern!

I am wrriting you from Croatian Alliance for Rare Diseases. Please let me introduce our Alliance and "Hug for Rare" action for RDD 2016.
Croatian Alliance for Rare Diseases is the umbrella organization for rare diseases in Croatia. Today we gather 21 member

… [Read More]

The descendents of Bickel, Følling and Guthrie have all been part of the E.S.PKU Conference 2015 in Berlin, Germany.
If you have missed the opportunity to hear them give their presentation here is your chance to view them.





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A few years back E.S.PKU has conducted interviews and gathered data in 5 countries in order to compare how PKU is treated.
Results showed that the treatment is vastly different throught Europe. This was the starting point for future efforts of E.S.PKU.

European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria wrote:

… [Read More]

ESPKU Annual Conference 2014, Zagreb, Croatia

Ladies and gentlemen, dear patients, parents, delegates and professionals!

First of all I’d like to thank the organisers for the opportunity to speak again at the occasion of an ESPKU Annual Conference. I have already had a presentation “on the way to consensus” two years ago in Liverpool, and today I will build on this presentation and tell you… [Read More]

Welcome
Hi, my name is Nicola Bramley and I would like to share some experiences with you about my life with PKU (so far)

Bonjour et bienvenue a ESPKU 2012. Je suis Nicola Bramley et je vais vous parler de mes experiences avec PKU pendant ma vie

Buongiorno e benvenuti a ESPKU 2012. Sono Nicola Bramley et voglio parlarvi di mie esperienze con PKU nella mia vita

Just thought I’d make our… [Read More]