Blogger

Phedup is a patient action group campaigning for access to new treatments for the #RareDisease #PKU. Hope is strength.

[Blogger @phedupcampaign]

Patients and families living with #pku can work with our wonderful NHS staff and our MPs to improve lives. @NSPKU

[Caroline Graham @CarolinePKU]

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

[Natasha Fox (Cotter) @foxcot]

@ChrisMRiches @PKUFamily @Daily_Express @MattHancock @BorisJohnson @DHSCgovuk @NHSEngland @NHSuk @Carolin93205471 Can I add my MP @vickyford 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

[Chris Riches @ChrisMRiches]

Our pleasure @PKUFamily. @Daily_Express determined to win health justice for #PKU sufferers in the UK. #kuvan @MattHancock @BorisJohnson @DHSCgovuk @NHSEngland @NHSuk @Carolin93205471 #dailyexpresscrusade4pku

[Caroline Graham @CarolinePKU]

@ChrisMRiches @PKUFamily @Daily_Express @MattHancock @BorisJohnson @DHSCgovuk @NHSEngland @NHSuk Can I add my MP @Jeremy_Hunt to this list of MPs. He kindly supports our family as his constituents and this wider campaign.

[Albie Donnelly @bickfordblue]

@Carolin93205471 @ChrisMRiches @PKUFamily @Daily_Express @MattHancock @BorisJohnson @DHSCgovuk @NHSEngland @NHSuk We will get it , and we won't give up .

[Geoff Maynard @g_maynard]

Good news on our PKU campaign for Kuvan on the NHS and CF in today’s Express thanks to ⁦@ChrisMRiches⁩ and ⁦@MotherhoodvsCF⁩

[Gillian Taylor @Gillian76810509]

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

[Emily Steers @emilysteers5]

New bib for my little boy 💙💙

[Natasha Fox (Cotter) @foxcot]

Good luck @hodgejonesallen @PeterTodd_ and team today. Thank you for all you have done and are doing for the PKU community @PKUFamily @NSPKU

[Caroline Graham @CarolinePKU]

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.

[Vicky Ford @vickyford]

Letter penned to @MattHancock & will be signed and delivered tomorrow.

[Kate Learoyd @PKUFamily]

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 @BorisJohnson

[Kate Learoyd @PKUFamily]

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 @MattHancock @vickyford

[Kate Learoyd @PKUFamily]

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.

[Kate Learoyd @PKUFamily]

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

[Kate Learoyd @PKUFamily]

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.

[Kate Learoyd @PKUFamily]

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?

[Kate Learoyd @PKUFamily]

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.
@MattHancock @JonAshworth @Daily_Express @ChrisMRiches

[Helen @earpytwerpy]

#pku is so cruel at times. It saddens me that Charlotte can’t get medicine on the nhs! Kuvan would be perfect for her but sadly that currently can’t happen