Some of you have asked us recently if we know when the new slow-release cysteamine medication (Procysbi), will be available on the NHS. What we can tell you is that we are talking with the pharmaceutical company that produces Procysbi, Horizon Pharma, and are hopeful that their negotiations with the NHS come to a conclusion soon.
Please keep an eye on our website and Facebook page, when we can provide more information we will post another update.