Webinars

Neuropathy and Amyloidosis

Dr. Sami Khella, Professor of Neurology and co-founder of the Amyloidosis Program at the University of Pennsylvania discussed the latest in diagnosis, treatment, and management of neuropathy and amyloidosis.

Webinars

ATTR Clinical Trial Updates

ARC Executive Director of Research Kristen Hsu presented an overview of the different approaches to treating ATTR amyloidosis, as well as the most current updates for the clinical trial landscape, with a focus on ATTR trials.

Webinars

ATTR Cardiac Treatments

Dr. Jan Griffin, amyloidosis cardiologist at the Medical University of South Carolina, discussed how ATTR affects the heart and explored advances in treatments for ATTR-CM.

Webinars

Understanding Living with Amyloidosis: Insights from the ARC Annual Community Survey

Sabrina Rebello, ARC's Senior Research Manager, presented an in-depth overview of key insights from our Annual Community Survey. This webinar focused on understanding the experiences of patients and caregivers throughout their diagnostic journey and ongoing care.

AL Amyloidosis

Clinical Trial Updates for the AL Community

Kristen Hsu, ARC’s Executive Director of Research, presented the most current updates for the clinical trial landscape, with a focus on AL amyloidosis. Kristen also discussed the direction future research.

AL Amyloidosis

Emotional Aspects of Amyloidosis

Dr. Meghan Beier, psychologist at the Rowan Center for Behavioral Medicine, explored the emotional aspects of amyloidosis. She discussed mental health issues in amyloidosis and present strategies for coping.

AL Amyloidosis

Amyloidosis 101

Dr. Sarah Cuddy, cardiologist at Brigham and Women's Hospital, explored the basics of amyloidosis. She presented an introduction to amyloidosis, the different types, and the available treatments. The webinar concluded with a Q&A session.

AL Amyloidosis

Clinical Trial Updates for the ATTR Community

ARC Executive Director of Research Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on ATTR amyloidosis. Kristen will discussed the direction of future research. The webinar concluded with a Q&A session.

Webinars

Coffee Chat with ARC

To wrap up 2024, this month’s ARC Talks Webinar consisted of a conversation with ARC staff. We shared highlights from 2024, started to look ahead to 2025, and answered your questions about the work we do for the amyloidosis community.

AL Amyloidosis

Caring for the Caregiver

In honor of National Family Caregivers Month, ARC hosted a discussion between Debra Ruehlman, amyloidosis family caregiver, and Ann Payne, MSW, ARC Clinical Care and Education Manager. This webinar explored topics such as self care, self advocacy, and community resources.

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Medicare and the Evolving Financial Landscape

Covering information on Medicare basics, choosing a Part D plan, and coverage gaps, ARC was joined by Sylvia Gary from the Centers for Medicare and Medicaid Services (CMS).

AL Amyloidosis

Clinical Trial Updates for the AL Community

ARC's own Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on AL amyloidosis. Kristen also discussed the direction future research.

AL Amyloidosis

GI Disturbances and Symptom Management

Dr. Sara Horst discussed how amyloidosis can impact the gastrointestinal tract, GI symptoms, and symptom management.

AL Amyloidosis

Clinical Trial Updates for the ATTR Community

ARC's own Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on ATTR amyloidosis.

Webinars

Physical Therapy for Amyloidosis Management

Physical therapists Kelsi Schiltz, and Katie Johnson provided recommendations for managing neuropathy symptoms.

AL Amyloidosis

Visualizing Amyloidosis: The Role of Imaging

Dr. Sharmila Dorbala explained the role that medical imaging techniques play in both diagnosing and managing amyloidosis.

AL Amyloidosis

Devices for Heart Improvement

Amyloidosis cardiologist, Dr. Mazen Hanna discusses the function of implantable, electronic devices in cardiac management of amyloidosis patients.

AL Amyloidosis

An ARC Fireside Chat

The dedicated team behind the transformative initiatives of ARC discuss the impactful work of the Leadership, Research, Development, Communications, and Community Alliance departments.

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Navigating Care Choices at the End of Life

Jill Waldron, NP and Rebecca Kirch provide guidance on navigating care choice options for amyloidosis patients and caregivers during health decline.

AL Amyloidosis

Knowing Your Rights: Understanding Health insurance Coverage

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.

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Kidney Disease Presentation in Amyloidosis

Dr. Nelson Leung focused on renal involvement in AL, AA, ALECT2 and ATTR amyloidosis, while discussing treatment and response assessments for each type.

Webinars

Cardiac and Neurological Approaches in ATTR Management

Dr. Nativi-Nicolau and Dr. Elizabeth Mauricio discussed the decision pathway in management of ATTR amyloidosis from the cardiac and neurological standpoint.

Webinars

Approaches to Treating Relapsed and Refractory AL Amyloidosis

Dr. Heather Landau discussed current treatment options for relapsed and refractory AL amyloidosis patients. Dr. Landau also talked about the current testing methodology used to monitor a patient’s disease status, and the role maintenance therapy may play in the management of relapsed AL amyloidosis.

AL Amyloidosis

The Fundamentals of Clinical Trials and Current Advances in Amyloidosis Research

Dr. Morie Gertz gave a 101 overview of clinical trials, including consideration in how they are designed, and the phases needed for drug development. Dr. Gertz also discussed current clinical trials that are evaluating the next generation of drugs for the treatment of AL and ATTR amyloidosis.

Webinars

Hereditary ATTR Amyloidosis: The Role of Genetic Testing and Recommendations for Genetic Carriers

Cardiologist Dr. Ahmad Masri MD, MS and genetic counselor Emily Brown, MGC, CGC discuss the role of genetic testing in hereditary ATTR amyloidosis care, along with providing disease management recommendations for genetic carriers.

Webinars

The Role of Stem Cell Transplants in AL Amyloidosis Treatment

Sandy Wong, MD, and Nancy Wong, NP, discuss autologous stem cell transplantation as a therapy choice for AL amyloidosis patients. Dr. Wong outlines each phase of the process and goes over the function of stem cell transplants in the context of medical care. Nancy Wong discusses how to prepare for a stem cell transplant while highlighting key care considerations for each phase of therapy. Her concluding remarks focus on important considerations during the recovery period.

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Overview of ARC’s Research Programs and Results of the Patient Community Survey

Kristen Hsu, Executive Director of Research, and Sabrina Rebello, Research Manager, provide an overview of ARC’s research programs, share findings from our 2022 community survey results, and highlight the future direction of ARC’s research.

Webinars

Amyloidosis and Nutrition: Eating for Your Health

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.

AL Amyloidosis

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