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 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®
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
A tool to help keep track of your family history
Information and Support Groups
Amyloidosis Alliance is an international umbrella patient advocacy organisation, aiming to raise awareness and improve the quality of care of amyloidosis patients.
info@ttramyloidosis.uk
UK ATTR Amyloidosis Patients' Association acts to provide extensive patient information and support.
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.
Patient Stories
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.
