Resources/Patient Support

The role of older generations in families with hereditary diseases has been recognised and associated to their function as guardians of the family's medical history…

Cardiac Amyloidosis - What You Need to Know January 20, 2024 12PM - 2:30PM ET Please join Amyloidosis Support Groups on January 20th from 12:00 pm - 2:30 pm ET for…

Nashville Support Group Meeting Saturday, December 2nd, 2023 12:00 - 2:00 pm CT Presenters: Jon Wall and Emily Martin UT Knoxville: Ongoing Clinical Trials:…

In this edition we hear from John Hicks and his experience of being a carer to his wife Joyce for the last 6 years. We also have an update from Gary Mines, who was…

Webinar AL Amyloidosis On October 26, 2021 the first ever World Amyloidosis Day will be organized by Amyloidosis Alliance and patient organisations from 18…

People living with rare diseases face a unique set of challenges, from reaching a timely and accurate diagnosis to accessing treatment. Although individual rare…

ATTR amyloidosis is a frequently unrecognized but increasingly important cause of cardiomyopathy and neuropathy. While relatively uncommon compared to other…

Is the COVID-19 vaccine safe? How effective is it? The United States Food and Drug Administration (FDA) has granted emergency approval for the COVID-19 vaccine.…

Event Date: Mar. 13, 2020 Event Time: 12:00 - 1:00 p.m. ET Event Location: Webex COVID-19 is causing significant concerns globally. During this webinar,…

Knowing where to go for information when diagnosed with Amyloidosis is key. This is a difficult disease from a diagnosis standpoint, and getting it right is…