Resources

Many types of amyloidosis can affect patients’ nerves, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience neuropathy and in fact, some patients may have nerve-related symptoms as their most predominant sign or chief complaint.

Dr Sasha Tuchman, Director of the Myeloma and Amyloidosis Program at UNC gives an overview of AL amyloidosis, before taking a deep dive into the different types of currently available treatments for different disease stages. He also touches on future directions including clinical trials. The webinar concludes with an audience question and answer session.

Mathew S Maurer, Preston Dunnmon, Mariana Fontana, Christina Candida Quarta, Krishna Prasad, Ronald M. Witteles, Claudio Rapezzi, James Signorovitch, Isabelle Lousada, Giampaolo Merlini, Circulation: Heart Failure, 121.009038, March 2022

Rare disease mental health expert Kym Winter will equip you with the resources and tools you need to take care of your mental health. In this interactive session, you will be introduced to the Stress Bucket Approach, which is a simple way of thinking about and looking after your own - and others’ - emotional wellbeing in order to live well with the impacts of a rare disease such as amyloidosis. Original presentation date February 23, 2022

In this ARC Talks special presentation, Coffee with ARC, some members of the ARC team will provide an overview of ARC's history and areas of focus, as well as our plans for 2022 and beyond. Original presentation date December 9, 2021

In amyloidosis, common symptoms such as gastrointestinal manifestations and neuropathy are often the most troublesome for patients. In our ARC Talks Webinar for patients and caregivers, amyloidosis experts from across multiple specialties explain approaches for symptom management. Our experts provide you with the knowledge you need to live well with amyloidosis. Original presentation date October 26, 2021

In this ARC Talks Webinar for patients and caregivers, Professor Julian Gillmore, the Head and Research Lead of the National Amyloidosis Centre in London, describes the role of gene editing in hereditary diseases like hATTR, and shares the early results of Intellia’s CRISPR trial. Intellia’s Head of Development for In Vivo programs, Dr. Liron Walsh, joins Professor Gillmore for a question and answer session.

This ARC Talks Webinar covers everything that patients and their families should know about wild-type transthyretin amyloidosis. Dr. Martha Grogan, Founder and Director of the Cardiac Amyloid Clinic at the Mayo Clinic, covers disease progression, prognosis, treatment options, and more. Dr Grogan then answers questions from the audience from our live presentation on June 10, 2021.