News

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 2021) in partnership with Metabolic Support UK and we’re very pleased that this is the outcome, you can find out […]

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 minutes and raised a tremendous £1134. Tom’s partner’s daughter, Maeve, has cystinosis. Tom posted the following on completion: “I can […]

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 early diagnosis but also to enable patients and families to have a better experience in the healthcare system. When I […]

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 manufacture the drops, they told us that they are “currently out of stock of cysteamine hydrochloride 0.55% eye drops following […]

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 known about it, leading to the development of the main medication used to treat cystinosis, without which life expectancy was […]

As you’re probably aware, there is a new medication with the same active ingredient as Cystagon, cysteamine, but in a slow-release formulation – meaning a less frequent dosing schedule and potentially fewer side effects. That drug is called Procysbi, it’s available to patients in other countries, including the US and parts of Europe. Unfortunately, this […]

We are extremely pleased to announce that, for the first time, we have collaborated with Cystinosis Ireland to jointly fund 2 new important research projects to a total value of €250,000. The first research project is entitled “Analysis and exploration of novel treatment approaches for muscular disease in cystinosis”, which will be led by Principal […]

This Sunday, 5th September a team of 5 fundraisers is taking on the ‘Tough Mudder‘, which is described as ‘a series of obstacle and mud runs that will push your physical and mental limits’. And, as the name suggests, it is known to be a very muddy challenge. Their JustGiving page was set up by […]

Following advice from the Clinical Priorities Advisory Group (CPAG), NHS England has agreed to routinely commission mercaptamine hydrochloride viscous eyedrops (Cystadrops) for corneal cystine deposits, in people aged 2 years and over. In other words, doctors treating patients with cystinosis in England will soon be able to prescribe the new formulation of eye drops, called […]

On Saturday 10th Oct 2020 Cystinosis Foundation UK ran their first online Cystinosis Symposium, co-hosted by Metabolic Support UK as part of their 2020 Virtual Annual Conference. In a packed 2 hour session we heard from 4 contrasting speakers before opening up into a Q & A session, expertly moderated by Pushpa Hossein from MSUK. […]

Procysbi Available in Wales Following a decision by the ‘All Wales Therapeutics and Toxicology Centre’ Procysbi [...] Read more...
Latest News and Updates Webinar – 27th November 2021 Please join us on Saturday, 27th November at 2pm for our ‘Latest News and Updates’ [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Please Subscribe to Our New Mailing List We are very excited to launch our new mailing list! By signing up for free at the link below [...] Read more...
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