For all types of amyloidosis…
NHS Amyloidosis Information
NHS Web page giving a general overview of amyloidosis, causes, different types and symptoms.
We like: Easy to understand.
For: patients, carers, health care professionals
One Amyloidosis Voice
USA-based professional organisation offering a collection of up to date, high quality amyloidosis resources from around the world.
We love: They do great plain language summaries of medical publications, and have a forum for private chats with other patients / carers.
For: patients, carers, health care professionals
Amyloidosis Alliance
International advocacy umbrella group founded and run by amyloidosis patients. The website has good information and resources.
We love: Information available in different languages.
For: patients, carers
Amyloidosis Research Consortium (ARC)
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: Their resources page!
For: patients, carers, health care professionals
Cardiomyopathy UK
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: cardiac, patients, carers, health care professionals
Symptom tracker app (STAR)
Free app to help track and record changes in amyloidosis symptoms.
We love: You can create and download reports of your symptoms to share with your doctor or nurse.
For: patients
For AL amyloidosis…
Myloma UK Website
Myeloma UK provide information about AL amyloidosis, it’s diagnosis, symptoms, treatment.
We love: Prof Wechalekar’s video.
For: patients, carers, health care professionals
For AA amyloidosis…
AA Amyloidosis Patient Information Leaflet
Printable information leaflet for AA amyloidosis patients providing an overview of the disease and it’s treatment.
We love: It’s comprehensive.
For: patients, carers
For ATTR amyloidosis…
World Heart Federation videos
Videos from a patient and doctor and nurse experts on recent improvements in the cardiac amyloidosis landscape and remaining unmet needs.
We love: Engaging rapportage-style videos covering important topics.
For: patients, carers, health care professionals
The hATTR Bridge
Website providing a wealth of information, tools and resources.
We love: The ‘Speaking to Your Doctor’ page and Video Library.
For: patients, carers
Resources
Here you’ll find a range of useful information and resources to help guide you through your diagnosis and help support you with the management of your condition. We’re always adding to this section to try and improve the available content for our members. If you feel that something would be helpful to add, please get in touch.
For all types of amyloidosis…
NHS Amyloidosis Information
NHS Web page giving a general overview of amyloidosis, causes, different types and symptoms.
We like: Easy to understand.
For: patients, carers, health care professionals
One Amyloidosis Voice
USA-based professional organisation offering a collection of up to date, high quality amyloidosis resources from around the world.
We love: They do great plain language summaries of medical publications, and have a forum for private chats with other patients / carers.
For: patients, carers, health care professionals
Amyloidosis Alliance
International advocacy umbrella group founded and run by amyloidosis patients. The website has good information and resources.
We love: Information available in different languages.
For: patients, carers
Amyloidosis Research Consortium (ARC)
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: Their resources page!
For: patients, carers, health care professionals
Cardiomyopathy UK
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: cardiac, patients, carers, health care professionals
Symptom tracker app (STAR)
Free app to help track and record changes in amyloidosis symptoms.
We love: You can create and download reports of your symptoms to share with your doctor or nurse.
For: patients
For AL amyloidosis…
Myloma UK Website
Myeloma UK provide information about AL amyloidosis, it’s diagnosis, symptoms, treatment.
We love: Prof Wechalekar’s video.
For: patients, carers, health care professionals
For AA amyloidosis…
AA Amyloidosis Patient Information Leaflet
Printable information leaflet for AA amyloidosis patients providing an overview of the disease and it’s treatment.
We love: It’s comprehensive.
For: patients, carers
For ATTR amyloidosis…
World Heart Federation videos
Videos from a patient and doctor and nurse experts on recent improvements in the cardiac amyloidosis landscape and remaining unmet needs.
We love: Engaging rapportage-style videos covering important topics.
For: patients, carers, health care professionals
The hATTR Bridge
Website providing a wealth of information, tools and resources.
We love: The ‘Speaking to Your Doctor’ page and Video Library.
For: patients, carers