This is a very rare autosomal dominant disease which was first described in 2008. It starts shortly after birth and somewhat resembles CAPS, with at least some features of cold induction, fever, limb aches, ‘nettle’ rash and deafness. As in all the inherited fever syndromes there are raised levels of inflammatory markers.
Coronavirus Update
Information about COVID-19 (corona) for patients with amyloidosis is available on the National Amyloidosis Centre website – see here.
FAQs
Read our FAQs – for answers to the most frequently asked questions about amyloidosis.
Patient Forum
Visit our online forum – a place where patients with amyloidosis, family, friends and carers from all over the UK can connect, communicate and help each other.
NAC Videos
Videos of National Amyloidosis Centre (NAC) staff explaining common tests carried out at the NAC.
Local Support Groups
Information about local amyloidosis support group meetings in various UK locations. Please be in touch if you are interested in joining.
Patient Information leaflets
These are available as downloadable PDFs on the UCL website.