
Resources
For All Types of Amyloidosis...
Symptom tracker app (STAR)
read more →Free app to help track and record changes in amyloidosis symptoms.
We love:Â You can create and download reports of your symptoms to share with your doctor or nurse.
For:Â patients
Cardiomyopathy UK
read more →A UK charity offering support to anyone affected by cardiomyopathy. The general cardiomyopathy information on their website is applicable to amyloidosis, there is also a dedicated page for amyloidosis patients.
We love: They operate a nurse helpline which is open Monday to Friday from 8:30 am – 4:30 pm.
For:Â cardiac, patients, carers, health care professionals
Amyloidosis Research Consortium (ARC)
read more →USA-based organisation whose British founder is an AL amyloidosis patient. Some information is USA-specific however, their website offers a wealth of reliable information and resources.
We love:Â Their resources page!
For:Â patients, carers, health care professionals
Amyloidosis Alliance
read more →International advocacy umbrella group founded and run by amyloidosis patients. The website has good information and resources.
We love:Â Information available in different languages.
For:Â patients, carers
One Amyloidosis Voice
read more →USA-based professional organisation offering a collection of up to date, high quality amyloidosis resources from around the world.
We love:Â They do great plain language summaries of medical publications, and have a forum for private chats with other patients / carers.
For:Â patients, carers, health care professionals
NHS Amyloidosis Information
read more →NHS Web page giving a general overview of amyloidosis, causes, different types and symptoms.
We love:Â Easy to understand.
For:Â patients, carers, health care professionals
For AA Amyloidosis...
AA Amyloidosis Patient Information Leaflet
read more →Printable information leaflet for AA amyloidosis patients providing an overview of the disease and it’s treatment.
We love: It’s comprehensive.
For:Â patients, carers
For AL Amyloidosis...
Myloma UK Website
read more →Myeloma UK provide information about AL amyloidosis, it’s diagnosis, symptoms, treatment.
We love: Prof Wechalekar’s video.
For:Â patients, carers, health care professionals
For ATTR Amyloidosis...
The hATTR Bridge
read more →Website providing a wealth of information, tools and resources.
We love: The ‘Speaking to Your Doctor’ page and Video Library.
For:Â patients, carers
World Heart Federation videos
read more →Videos from a patient and doctor and nurse experts on recent improvements in the cardiac amyloidosis landscape and remaining unmet needs.
We love:Â Engaging rapportage-style videos covering important topics.
For:Â patients, carers, health care professionals