The Information Standard Scheme came to an end on the 31st July 2019. This information is for reference only.
The process for producing patient information on this site is accredited by the Information Standard. This highlights our commitment to produce high-quality, evidence-based information for both patients and clinicians.
The Rare Disease Committee shall hold responsibility for the accuracy of the information they publish and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on this website on behalf of the Rare Disease Committee.
In order to maintain relevance and ensure accuracy, the information on this site will be reviewed every year, with amendments and updates made as required.