Resources

The resources below can help you connect with other people affected by hereditary ATTR (hATTR) amyloidosis and learn more about the condition.

Downloads

Educational Resources

STAR Symptom Tracker

STAR is a digital symptom tracker for people with ATTR amyloidosis and their families that makes it easy to record symptoms

Developed and financed by Alnylam Switzerland GmbH®

Our hATTR amyloidosis journey

A collection of personal experiences from people living with hATTR amyloidosis

Your health and hereditary ATTR amyloidosis

An updated booklet to learn more about hATTR amyloidosis - now also called ATTRv amyloidosis

Genetic testing in hATTR amyloidosis

An overview of genetic testing in hATTR amyloidosis and summary of the latest guidelines for people with, or at risk of, the condition

Family Resources

Your family and hereditary ATTR amyloidosis

A brochure to help guide important discussions with family and loved ones

Family health tree

A tool to help keep track of your family history

Information and Support Groups

Amyloidosis Alliance logo

Amyloidosis Alliance is an international umbrella patient advocacy organisation, aiming to raise awareness and improve the quality of care of amyloidosis patients.

 

UK ATTR Amyloidosis Patients’ Association
info@ttramyloidosis.uk

UK ATTR Amyloidosis Patients' Association acts to provide extensive patient information and support.

 

ATTR Amyloidosis All Ireland Support Group
amymattrs@gmail.com

ATTR Amyloidosis All Ireland Support Group offers support to patients affected by Hereditary ATTR Amyloidosis or Wild Type ATTR Amyloidosis. We are committed to raising awareness to ensure people are diagnosed and have access to available treatments at the earliest opportunity.


“Always remember that you are coming from a place of care and concern for your family member.”

Tootie Bueser, Cardiac Genetic Nurse
Hear a Cardiac Genetic Nurse's Advice on Talking to Your Family About Your Diagnosis

Patient Stories


STAR: The Symptom Tracker app does not pursue a medical purpose. It is designed to keep a record of users’ symptoms, how they change over time and their impact on users’ well-being and lifestyle. The app is not intended as a disease monitoring tool or as a symptoms checker. To have symptoms checked, users are advised to talk to their healthcare professional. Furthermore, STAR: The Symptom Tracker app does not make any medical diagnoses. Users are advised to seek the advice of a medical professional if they are concerned about their health.