Following a decision by the ‘All Wales Therapeutics and Toxicology Centre’ Procysbi will now become routinely available in the NHS across Wales to treat cystinosis. We took part in the appraisal process last year (December…
Joined: February 2020 My daughter, Morven, was diagnosed with nephropathic cystinosis in 2010, at 9 months old. As well as keeping busy looking after Morven and her younger sister and brother, I work full time…
Joined: February 2020 I am Researcher in a Midlands based University. My son was diagnosed with cystinosis in 2018. I found that the foundation has been doing a fantastic work in supporting those who live…
Joined: January 2009 My daughter has cystinosis and is a patient of the Queen Elizabeth hospital in Birmingham. I am a company director and work in technology. I enjoy my work with the Foundation and…
Joined: February 2014 I have nephropathic cystinosis and am a patient of the Queen Elizabeth hospital in Birmingham, where I had a kidney transplant in 2008, The main focus of my role is that of…
Joined: February 2020 My granddaughter, Ellie, was diagnosed with nephropathic cystinosis in 2016, just after her 1st birthday. Her twin sister, Molly does not have the condition. I’m a retired librarian and am keen to…
In October last year Tom Wood ran his first ever marathon to raise money for CFUK. Sporting one of our t shirts Tom finished the Manchester Marathon in the commendable time of 3 hrs 53…
It’s good to talk – It’s good to listen(Our experience with the Student Voice Prize) One of Cystinosis Foundation UK’s aims is to help inform the medical profession about cystinosis, not only to help with…
We recently became aware that many patients have been unable to get any supply of the unlicensed 0.55% cysteamine hydrochloride eye drops they are prescribed. We contacted Guy’s and St Thomas’ NHS Foundation Trust, who…
We are saddened to hear that Dr. Jerry Schneider sadly passed away on 28th December 2021. Dr. Schneider devoted his entire career to cystinosis. He and his colleagues researched the condition when very little was…