Amyloidosis Patient Information Site
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  • Home
  • Frequently Asked Questions
  • Forum
  • Essentials
    • Introduction to Amyloidosis
    • Nomenclature – what’s in a name?
    • About the National Amyloidosis Centre
    • Patient and public involvement
  • About Amyloidosis
    • AL Amyloidosis
      • Understanding AL Amyloidosis
      • Symptoms and Signs of AL Amyloidosis
      • Investigations for AL Amyloidosis
      • Treatment of AL Amyloidosis
      • Understanding Free Light Chains (FLCs)
      • Living with AL Amyloidosis
    • ATTR Amyloidosis
    • AA Amyloidosis
      • Introduction to AA Amyloidosis
      • Diagnosis of AA amyloidosis
      • Treatment of AA Amyloidosis
    • Hereditary Amyloidosis
      • General information
      • Genetics of hereditary amyloidosis
      • Genetic testing
      • ATTR Amyloidosis
      • AFib amyloidosis
      • ALys amyloidosis
    • Cardiac Amyloidosis
      • About Cardiac Amyloidosis
      • Diagnosis of Cardiac Amyloidosis
      • Treatment of Cardiac Amyloidosis
    • Other Types of Amyloidosis
      • ALECT2 amyloidosis
      • AB2M Amyloidosis
      • Localised Amyloidosis
    • Diagnosis of Amyloidosis
      • Introduction to diagnosis of Amyloidosis
      • Tissue biopsy
      • Genetic testing
      • SAP scintigraphy (SAP scan)
      • Diagnosis of Cardiac Amyloidosis
    • Amyloid associated diseases
  • Fever Syndromes
    • The Periodic Fever Service at the National Amyloidosis Centre
    • The inherited periodic fever syndromes – general information
    • The inherited fever syndromes – information on each syndrome
      • Familial Mediterranean Fever – FMF
      • Colchicine in pregnancy
      • TNF receptor associated periodic syndrome (TRAPS)
      • Mevalonate Kinase Deficiency (MKD), also known as Hyperimmunoglobulin D syndrome and periodic fever syndrome (HIDS)
      • Cryopyrin-Associated Periodic Syndrome (CAPS)
      • NALP12 associated periodic fever syndrome
      • Deficiency of the IL-1 receptor antagonist (DIRA)
      • Pyogenic sterile arthritis, pyoderma gangrenosum and acne (PAPA) syndrome
      • Blau Syndrome
      • Majeed Syndrome
      • GPP/DITRA
      • JMP/CANDLE syndrome
      • Auto-inflammatory diseases of unknown cause
    • The CAPS National Treatment Service
  • NAC videos
    • Your visit to the NAC
    • Clinical advice
    • Professor Sir Mark Pepys – interview and lecture
    • Pathology and Genetics Laboratories
    • ATTR Amyloidosis Infoday January 2019
  • Trials
    • Amyloidosis Trials
    • AL Amyloidosis trials
    • ATTR Amyloidosis trials
    • AA Amyloidosis trial
    • Treating systemic amyloidosis by removing amyloid deposits from the tissues and organs of the body: good news, bad news and hope for the future
  • Contact
    • Privacy Policy
      • Cookie Policy

Hereditary Amyloidosis

General Information

Genetic basis of hereditary amyloidosis

Genetic testing

ATTR amyloidosis

AFib amyloidosis

ALys amyloidosis

  • 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

    Some patients with amyloidosis are interested in organising local support group meetings. Please be in touch if you are interested in joining.

  • Patient Information leaflets

    These are available as downloadable PDFs on the UCL website.
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