Webinars

The Heart of the Matter: Cardiac Amyloidosis

In this ARC Talks, Dr. Kevin Alexander, a cardiac amyloidosis specialist from Stanford University, discusses the cardiac signs and symptoms to recognize, treatment and management options for each type of Amyloidosis and the future direction of research in the field.

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Empowering Patients: Navigating Your Care

In this webinar Isabelle Lousada shares her experiences with amyloidosis and the lessons learnt on how to become an empowered and informed patient. Lisa Mendelson, nurse practitioner from Boston University’s Amyloidosis Program provides a valuable medical perspective about how to build a successful relationship with your care team. Original presentation date June 23, 2022.

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AL Amyloidosis: Treatment Approaches

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.

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Mental Health Matters: Caring for your Wellbeing

In this ARC Talks presentation, Mental Health Matters: Caring for Your Wellbeing, 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

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Coffee with ARC: Learn about ARC’s work

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

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Living Well with Amyloidosis

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

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The Role of Gene Editing in hATTR Amyloidosis

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.

Webinars

Taming Wild-Type

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.

Webinars

Stem Cell Transplantation in AL Amyloidosis

This ARC Talks Webinar covers everything that patients and their families should know about the role of stem cell transplantation in AL amyloidosis. Dr. Sandy Wong, Director of the Amyloidosis Program at the University of California San Francisco, describes the process of stem cell transplantation for AL amyloidosis patients. Terry Fogaren, a nurse practitioner from Tufts University Medical Center, shares information on how to prepare for and best recover from the procedure. The presentations are followed by a Q&A session from our live presentation on May 13, 2021.

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Amyloid Neuropathy Burden and Mangement

In this ARC Talks webinar, Dr. Kelsey Barrell from the University of Utah explains what causes neuropathy and other neurological symptoms in amyloidosis patients and offers suggestions to help manage these symptoms.

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GI Disturbances and Symptom Relief for Amyloidosis

Dr. John Clarke, a gastroenterologist and motility specialist with Stanford Medicine, covers everything that patients need to know about GI involvement and symptom management in amyloidosis, followed by a Q&A session.

Webinars

Caregivers: A Guide to Self-Care

Nancy Verel, a nurse at the Cleveland Clinic, shares her story about her family's journey through her husband's AL amyloidosis diagnosis and treatment. Robert David from BMC Cancer Support Programs provides coping and support strategies for caregivers.

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Physical and Occupational Therapy – Managing Your Amyloidosis

In this patient webinar, Mayo Clinic's occupational therapist Sarah Dahlhauser, OTD, OTR/L, and physical therapist Sarah Boyd, PT, DPT, discuss exercise principles for maintaining mobility and function, and home modifications for improved safety for amyloidosis patients.

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Genetic Testing for Hereditary TTR Amyloidosis

Genetic counselors Emily Brown and Katelyn Swade provide an overview of the science of genetic testing. They also discuss importance of genetic counseling for hereditary ATTR patients and their families.

Webinars

Webinar: What is Expanded Access?

This webinar covers access to innovative new therapies through expanded access programs with guest speakers Jennifer Miller, PhD, Assistant Professor at Yale University School of Medicine and Alison Bateman-House, PhD, MPH, Assistant Professor at NYU School of Medicine.

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