Living with amyloidosis

Resources to support patients, carers and health care professionals with the long-term and everyday challenges of living with amyloidosis

NHS Amyloidosis Information

NHS Web page giving a general overview of amyloidosis and the different types of the disease.

One Amyloidosis Voice

USA based website offering a collection of up to date, high quality amyloidosis resources from around the world. Suitable for patients, carers and health care professionals. All types of amyloidosis are covered.

Amyloidosis Alliance

International website providing information and resources for all types of amyloidosis and in a range of languages including English, French and Spanish.

Amyloidosis Research Consortium (ARC)

USA based organisation, their website offers a wealth of information and resources for all types of amyloidosis for patients, carers and health care professionals.

Symptom tracker App

Free app for tracking amyloisosis symptoms. Designed for ATTR patients 

Family Dialog Tool

Free app to help people affected by hereditary amyloidosis discuss the condition with family members who may also have inherited the disease.

The hATTR Bridge

Website bringing together information and resources for patients and carers affected by ATTR amyloidosis.

AL Amyloidosis Essential Guide

Printable guide to AL amyloidosis including information about diagnosis, symptoms and treatment. Produced by Myloma UK.

Myloma UK Website

Myloma UK’s web page with information about AL amyloidosis, it’s diagnosis, symptoms, treatment.

AL Patient Story from the British Heart Foundation

A short, real-life story of an AL amyloidosis patient who describes her diagnosis, treatment and how she has adapted her life since she was diagnosed.

AA Amyloidosis Patient Information Leaflet

Printable information leaflet for AA amyloidosis patients providing an overview of the disease and it’s treatment.

Cardiomyopathy UK

A charity offering resources and support to anyone living with cardiomyopathy, including amyloidosis. Their website has a wealth of information including advice on lifestyle and exercise, emotional wellbeing, benefits and financial issues.

They also operate a nurse led helpline available 8:30am-4:30pm Monday to Friday. Helpline: 0800 018 1024

Living with amyloidosis

Resources to support patients, carers and health care professionals with the long-term and everyday challenges of living with amyloidosis

NHS Amyloidosis Information

NHS Web page giving a general overview of amyloidosis and the different types of the disease.

One Amyloidosis Voice

USA based website offering a collection of up to date, high quality amyloidosis resources from around the world. Suitable for patients, carers and health care professionals. All types of amyloidosis are covered.

Amyloidosis Alliance

International website providing information and resources for all types of amyloidosis and in a range of languages including English, French and Spanish.

Amyloidosis Research Consortium (ARC)

USA based organisation, their website offers a wealth of information and resources for all types of amyloidosis for patients, carers and health care professionals.

Symptom tracker App

Free app for tracking amyloisosis symptoms. Designed for ATTR patients 

Family Dialog Tool

Free app to help people affected by hereditary amyloidosis discuss the condition with family members who may also have inherited the disease.

The hATTR Bridge

Website bringing together information and resources for patients and carers affected by ATTR amyloidosis.

AL Amyloidosis Essential Guide

Printable guide to AL amyloidosis including information about diagnosis, symptoms and treatment. Produced by Myloma UK.

Myloma UK Website

Myloma UK’s web page with information about AL amyloidosis, it’s diagnosis, symptoms, treatment.

AL Patient Story from the British Heart Foundation

A short, real-life story of an AL amyloidosis patient who describes her diagnosis, treatment and how she has adapted her life since she was diagnosed.

AA Amyloidosis Patient Information Leaflet

Printable information leaflet for AA amyloidosis patients providing an overview of the disease and it’s treatment.

Cardiomyopathy UK

A charity offering resources and support to anyone living with cardiomyopathy, including amyloidosis. Their website has a wealth of information including advice on lifestyle and exercise, emotional wellbeing, benefits and financial issues.

They also operate a nurse led helpline available 8:30am-4:30pm Monday to Friday. Helpline: 0800 018 1024