SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Procysbi Available in Wales

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 more at the link below.

https://awttc.nhs.wales/accessing-medicines/medicine-recommendations/mercaptamine-bitartrate-procysbi1/

Procysbi is an alternative to Cystagon, it contains the same active ingredient, cysteamine, but it is a delayed-release formulation meaning it is usually taken twice a day (verses four times a day for Cystagon), which has the potential to reduce side effects and create a more stable white cell cystine level. More information about Procysbi can be found at https://www.ema.europa.eu/en/medicines/human/EPAR/procysbi.
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