Living with PKU 5

Hi I'm currently doing a PhD on PKU & I’m hoping to contribute to improvements in dietary management & related outcomes (e.g. quality of life) of adult patients. With this blog I’ll try to keep you posted on my research. x Denise (Dutch PKU patient)

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Teilnehmer(18+) gesucht für Online-Studie zu kognitiver Funktionsfähigkeit bei PKU

psdlh Jul 12th 2017, 1:00pm - Articles+1

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]

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International PKU Day 2017

psdlh Jun 20th 2017, 1:55pm - Articles

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]

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Update

psdlh May 18th 2017, 11:30am - Articles

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]

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NSPKU part 1: outcomes of different levels of adherence to protein substitutes

psdlh May 6th 2016, 1:17pm - Articles+2

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]

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Hello & Happy Rare Disease Day!

psdlh Feb 29th 2016, 4:27pm - Articles+2

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]

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