Today in Parliament, I attended the Christmas drop-in event for the All-Party Parliamentary Group for Phenylketonuria (PKU).
It was good to have the opportunity to learn more about PKU and find out more about treatment options.
As I understand, one in 10,000 babies are diagnosed with PKU, a rare genetic disease with strict dietary limits, which can cause great distress and difficulty for patients - and their families - throughout their lives. Currently, babies are offered newborn blood spot screening to see if they have PKU - or other rare genetic diseases - and immediate treatment if the condition is confirmed.
I am encouraged to see that there is a range of support offered by the NHS in terms of PKU treatment, including specially-designed, low-protein staple foods available on prescription, and regular support, advice and training from NHS dieticians.
I am aware that more must be done to raise awareness of PKU and I recently tabled a question to the Department of Health and Social Care to ask what steps the Department is taking to help raise awareness of PKU.
You can also view this written question online on the Parliament website.
I’m grateful for the brilliant work that the APPG for PKU does and I will continue to closely follow their progress.