Wild-Type Amyloidosis

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

Reliability and validity of the Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire impact scales

Lovley, A., Hsu, K., LaGasse, K. et al. Reliability and validity of the Transthyretin Amyloidosis – Quality of Life (ATTR-QOL) Questionnaire impact scales. J Patient Rep Outcomes 9, 44 (2025). https://doi.org/10.1186/s41687-025-00880-7

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Hereditary ATTR 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.

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Development of Imaging Endpoints for Clinical Trials in AL and ATTR Amyloidosis: Proceedings of the Amyloidosis Forum

Dorbala, S, Adigun, R, Alexander, K. et al. Development of Imaging Endpoints for Clinical Trials in AL and ATTR Amyloidosis: Proceedings of the Amyloidosis Forum. J Am Coll Cardiol Img. null2025, 0 (0) . https://doi.org/10.1016/j.jcmg.2024.11.003

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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.

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Factors associated with financial toxicity in patients with transthyretin amyloidosis: results from Amyloidosis Research Consortium’s treatment affordability patient and caregiver survey

Rebello, S., Hsu, K., Nativi-Nicolau, J., Karam, C., Grogan, M., Lousada, I., & Maurer, M. S. (2025). Factors associated with financial toxicity in patients with transthyretin amyloidosis: results from Amyloidosis Research Consortium’s treatment affordability patient and caregiver survey. Amyloid, 1–10. https://doi.org/10.1080/13506129.2025.2462541

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Hereditary ATTR 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.

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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).

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GI Disturbances and Symptom Management

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

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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.

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Visualizing Amyloidosis: The Role of Imaging

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

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Devices for Heart Improvement

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

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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.

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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

Wild-type ATTR: Ralph’s story

Ralph, a patient with Wild-Type ATTR amyloidosis, describes his journey to diagnosis. A commercial and technical diver, Ralph’s bilateral carpal tunnel was often attributed to his career. After multiple doctors misdiagnosed Ralph, one physician sent a tissue sample out for a biopsy, which led to Ralph’s amyloidosis diagnosis. From there, a journey of self-education, empowerment, and treatment have helped him take on amyloidosis and keep living, despite the challenges of this difficult disease.

Patient Stories

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

Current ATTR landscape: Treatments and Trials

Amyloidosis expert Dr. John L. Berk presents the most current treatment options for ATTR amyloidosis. Dr. Berk also discusses clinical trials and future research. The webinar concludes with a Q and A session.

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.

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Gastrointestinal Involvement in Amyloidosis

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.

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The Heart of the Matter: Cardiac Amyloidosis

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

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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Neuropathy in Amyloidosis

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.

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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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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

wild-type Transthyretin Amyloidosis disease and treatment overview booklet cover

Disease and Treatment Overview: Wild-Type Transthyretin Amyloidosis

Wild-type transthyretin amyloidosis (ATTRwt) is an age-related disease caused by transthyretin (TTR) proteins that become unstable, misfold, and build up in organs, impairing their function. It is a slowly progressive condition that affects older people, most often Caucasian men over 65 years of age. Heart disease is the hallmark of ATTRwt, but it is commonly preceded by other conditions, such as carpal tunnel syndrome or spinal stenosis.

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Introducción a la Enfermedad y Tratamiento: Amiloidosis Por Transtirrentia Natural

La amiloidosis por transtiretina de tipo salvaje (ATTRwt) es una enfermedad relacionada con la edad causada por proteínas transtiretina (TTR) que se vuelven inestables, se pliegan mal y se acumulan en los órganos, lo que altera su función. Es una afección de progresión lenta que afecta a personas mayores, con mayor frecuencia a hombres caucásicos mayores de 65 años. La enfermedad cardíaca es el sello distintivo de ATTRwt, pero comúnmente va precedida por otras afecciones, como el síndrome del túnel carpiano o la estenosis espinal.

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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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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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Wild-type ATTR: James’ story

James' only concerning symptom leading up to his diagnosis was bilateral edema. But, after a stroke, James spent a month in the hospital and received a surprising diagnosis of Wild-Type Transthyretin Amyloidosis. James shares his story and optimism just months after his diagnosis.

Patient Stories

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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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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