Hello & Happy Rare Disease Day!

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  • 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.), going to gigs and just generally spending time with my friends and family (doing any of those things and more). I'm currently training for my first half marathon and completed the Coast2Coast last year (so I'm looking for a new cycling challenge if anyone has any suggestions!).

    Apart from that, I am doing research on PKU as part of my PhD!

    I've always enjoyed organising (big) events and socializing. When I was at uni I was in the board of the organisation of a big student hockeytournament (>1500 people) for a few years (I don't actually play hockey but I bet you already guessed that that's not the only thing you can do at such a tournament!). During my last years at uni I tried to give back to the PKU community by organising the national PKU day of the Dutch patient organisation several times. This has been a lot of fun and made me realise that most choices I have made (study wise) came from a need to understand PKU and the mechanisms behind PKU better and that I would like to be more active in the PKU community in some way. I enjoy doing nutritional research and realised I would love to be able to do research on something that was very close to my heart (PKU). To this end I (together with my supervisors) have worked long and hard to secure funding to to a PhD and am curently making my dreams come true at Leeds University (UK)! Now, I am hoping to contribute to improvements in the dietary management and outcomes of PKU and related to PKU (such as quality of life) in adult PKU patients.

    If you are an adult PKU patient yourself and would like to contribute to (online) PKU research during this special Rare Disease Day, please drop me an e-mail on psc-pku@leeds.ac.uk and you will get an e-mail with more information about my current research project (for more information you can also check out my thread on 'Research on PKU in adulthood' on the 'Teenagers and adults PKU'-page on the forum).

    With this blog I will try to keep you all posted on my doctorate research but also share findings of other research with you. If you have any requests for blog-topics, please feel free to contact me!
    Also: I've been invited to give a talk at the annual NSPKU conference 11-13th March and I'll be presenting preliminary results of my online research there, so make sure to keep an eye out for a post about the NSPKU conference on my blog!



    Twitter: @dlhofman
    e-mail: psdlh@leeds.ac.uk
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