In this ARC Talks webinar, amyloidosis cardiologist, Dr. Mazen Hanna discusses the function of implantable, electronic devices in cardiac management of amyloidosis patients.
In this ARC TALKS webinar, the dedicated team behind the transformative initiatives of ARC discuss the impactful work of the Leadership, Research, Development, Communications, and Community Alliance departments.
In this ARC TALKS webinar, Jill Waldron, NP and Rebecca Kirch provide guidance on navigating care choice options for amyloidosis patients and caregivers during health decline.
Knowing Your Rights: Understanding Health insurance Coverage
In this ARC talks webinar, Alicia Lawrence, Information and Resource Services Manager at the National Organization for Rare Disorders (NORD), discussed health insurance policies within private and government issued insurance.
In this ARC TALKS webinar, Briana Pineau, MS, RD, LDN, a registered dietician at Boston Medical Center, discusses the role nutrition can play in the management of amyloidosis symptoms. In addition to covering gastrointestinal involvement associated with various types of amyloidosis, Briana covers the broader health benefits of a balanced diet.
Many types of amyloidosis can affect patients’ gastrointestinal (GI) tract, causing painful, annoying, or even debilitating symptoms. It is common for patients with amyloidosis to experience GI involvement and in fact, some patients may have GI-related symptoms as their most predominant sign or chief complaint.
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.
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.
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.
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
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, 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.
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.
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.
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.
Join our email list to stay up to date on the latest Amyloidosis news.
In this ARC Talks webinar, amyloidosis cardiologist, Dr. Mazen Hanna discusses the function of implantable, electronic devices in cardiac management of amyloidosis patients.
Dr. Hanna provides clarity about which devices exist to assist patients, and the role they serve in heart maintenance. This includes devices for atrial fibrillation management, such as a watchman device, in addition to the indications for a pacemaker or ICD device.
Original Presentation Date:
February 08, 2024
Key Webinar Highlights:
0:00 — Introduction
3:18 — Start of presentation
4:27 — Atrial fibrillation diagram
6:56 — Atrial fibrillation in cardiac amyloidosis
10:02 — Atrial fibrillation: anticoagulation
12:06— Transesophageal echocardiogram (TEE)
13:13 — Intracardiac thrombosis in cardiac amyloidosis
16:08 — CAA occlusion
19:00 — Atrial fibrillation ablation
20:54 — Atrial fibrillation rate control
21:59 — Atrial fibrillation rhythm control
23:06 — Conduction
25:38 — How a pacemaker works
27:57 — Impact of RV pacing on outcomes in ATTR cardiac amyloidosis
28:29 — Cardiac resynchronization therapy in ATTR cardiac amyloidosis
30:17 — Ventricular Arrythmias in cardiac amyloidosis
31:37 — Primary prevention ICD in ATTR cardiac amyloidosis
32:41 — Standard protocol
33:52 — Guidelines for defibrillators
34:37 — MEMs based pressure sensor for monitoring pulmonary artery pressures