It’s the 11th birthday 🎂of #Kuvan for #pku today. We need this medicine in the U.K. #kuvan #11yearswaiting

In my work for NSPKU I have met adults with pku who are really affected by their condition, struggle with poorly funded clinic services and have no access to drug treatments. They are not the people here on Twitter, they are often virtually invisible even in our community.

People with #pku can’t eat food without getting brain damage. The NHS offers the treatment of not eating food. Medicine is available everywhere else for this condition. #kuvan11yearswaiting #pegvaliaseHowLongforThisOne?

As soon as the election is over, we NSPKU will be banging on the door of whoever is in charge asking for help. Enough is enough. Matt Hancock Jonathan Ashworth Daily Express Chris Riches

The #pku diet is not only tough but it’s expensive. 💴 You need fresh produce, special vegan foods and sugartaxed drinks. You need a freezer and the luxury of time ⏰. If you put that person in a situation of poverty they are in an even deeper hole to try and climb out of.

People with #pku have waited 11 years for access to the medicine #kuvan. Boris promised to do his utmost to get this sorted for people like Sam Parker immediately. At NSPKU we will be watching for progress on this and would like a meeting Matt Hancock Vicky Ford

Just to clarify, #kuvan is available in virtually every EU country, and we are very relieved you have undertaken the task of resolving this unjust situation Boris Johnson

Letter penned to Matt Hancock & will be signed and delivered tomorrow.

Looking forward to meeting people in Wales tomorrow. We all deserve modern up to date treatments and support for the issues of #PKU wherever we live in the UK. Working together and with other Rare Diseases makes us stronger.

Good luck Hodge Jones & Allen Peter Todd MEME and team today. Thank you for all you have done and are doing for the PKU community Kate Learoyd NSPKU

New bib for my little boy 💙💙

Thankyou @kymmarsh for signing the petition for KUVAN. We need others like you to support us. We are so grateful xx

Good news on our PKU campaign for Kuvan on the NHS and CF in today’s Express thanks to ⁦Chris Riches⁩ and ⁦Carlie Pleasant - Motherhood vs Cystic Fibrosis 🫁⁩

Congratulations very well deserved. This is journalism at its best. Rallying round people in need - changing lives.

Our pleasure Kate Learoyd. Daily Express determined to win health justice for #PKU sufferers in the UK. #kuvan Matt Hancock Boris Johnson Department of Health and Social Care NHS England NHS @Carolin93205471 #dailyexpresscrusade4pku

Chris Riches Kate Learoyd Daily Express Matt Hancock Boris Johnson Department of Health and Social Care NHS England NHS Can I add my MP Sir Jeremy Hunt MP to this list of MPs. He kindly supports our family as his constituents and this wider campaign.

Chris Riches Kate Learoyd Daily Express Matt Hancock Boris Johnson Department of Health and Social Care NHS England NHS @Carolin93205471 Can I add my MP Vicky Ford as she had been supporting as for a few years now as we continue to try to get Kuvan for our daughter Cait. 12 years old. 10 exchanges. 8 coolers a day. Desperate for Kuvan. 12 years waiting. Thank you so much Daily Express

@Carolin93205471 Chris Riches Kate Learoyd Daily Express Matt Hancock Boris Johnson Department of Health and Social Care NHS England NHS We will get it , and we won't give up .