The National Amyloidosis Centre (NAC) team has made fundamental discoveries about amyloidosis over more than 40 years and the NAC has been NHS funded since 1999 to provide diagnostic and management advisory services for all UK amyloidosis patients. We have devised and implemented new methods for diagnosis and treatment, leading to much improved outcomes for many patients. We have the largest, most diverse, patient cohort of any specialist amyloidosis centre in the world, with 5,000 patient visits each year for unequalled, state of the art, specialist investigations. The charitable Amyloidosis Research Fund within the Royal Free Charity provides invaluable support for our world leading research, our development of new treatments and delivery of key tests that are not available elsewhere.
The patients, families and carers are uniquely supported by the NAC Amyloidosis Awareness Programme. It includes the comprehensive patient information website, www.amyloidosis.org.uk; an expertly moderated online patient forum; patient information leaflets about all aspects of amyloidosis effects and treatments; newsletters about the NAC and its patients; and our Patient and Public Involvement (PPI) function. The UK Amyloidosis Advisory Group, UKAAG, comprising senior amyloidosis physicians and amyloidosis patients, ensures full Patient and Public Involvement with research and clinical care in the Centre.
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