It is #RareDiseaseDay.
We are researching diet management of #PKU#PhenylKetonUria
Here we describe how people with PKU manage their diet👉🏽
https://t.co/lIvSY4stoG
Here we describe all studies ever done on protein status and body composition in PKU👉🏽
https://t.co/NTNUmegEXH
Our crossover podcast on #pku in adults with @JHNDEditor feat. @SarahFirmanRD is now even easier to listen to.
Apple: https://t.co/HVG4yfDMVo
Spotify: https://t.co/EaLzJUOeam
Castbox: https://t.co/DJSVOIIWiL
@ProfWhelan
A fantastic piece of work looking at adults with PKU and exploring attitudes towards and knowledge of the diet. Collated just prior to sapropterin introduction this will form an interesting baseline too.
#pku#phenylketonuria
Great to discuss our research on the associations of knowledge, perceptions and dietary behaviours in adults with #PKU. Thanks @DrJNurse@JIMD_Editors and @JHNDEditor for having me on the #podcast
Podcast on how knowledge & attitudes to diet associate with diet adherence in #PKU
Podcast by awesome @SarahFirmanRD on our research with Dr Radha Ramachandran (great interview @DrJNurse@JIMD_Editors)
Podcast👉🏽https://t.co/xC2ywryFSP
Paper @JHNDEditor👉🏽https://t.co/lIvSY4aS06
Adults w #pku
1. Massive thank you to ppl who contributed
2. Read this brilliant paper on survey results re #pku diet, knowledge & perceptions of diet
Well done Sarah Firman (dietitian, researcher) & @ProfWhelan
👏👏👏
VERY interesting - click on link
https://t.co/ANxGzIoAY4
Do you have #Phenylketonuria#PKU?
(adults in the UK)
We are investigating your experience of diet in PKU - please consider taking part in survey!
https://t.co/QIFIHvbJZn
If you have PKU, or are a health professional working in PKU please re-tweet to increase patient voice.