Dawn, a patient with hereditary ATTR amyloidosis, describes her experience as a hereditary amyloidosis caregiver and patient, experiencing the onset of symptoms, her treatment journey, and advice for others living with hATTR amyloidosis.
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.
The Fundamentals of Clinical Trials and Current Advances in Amyloidosis Research
In this ARC Talks Webinar, 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.
Hereditary ATTR Amyloidosis: The Role of Genetic Testing and Recommendations for Genetic Carriers
In this ARC TALKS webinar, 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.
Sean, a patient with hereditary ATTR amyloidosis, describes his journey to diagnosis. Over an agonizing seven-year journey to diagnosis, Sean received bilateral carpal tunnel surgery, a hospital trip after a dire cardiac event, and saw multiple doctors fail to diagnose his amyloidosis. In his story, Sean shares the reason he is optimistic about the future and advice he has for others living with hereditary ATTR amyloidosis or still searching for a diagnosis.
Overview of ARC’s Research Programs and Results of the Patient Community Survey
In this ARC Talks webinar, 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.
In this ARC TALKS webinar, 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.
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 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.
We live in a time of rapid advances in genetic know-how and pharmacological technologies. The pace of discovery is accelerating, driving the development of new therapies, with 3 newly approved treatments. The exact course of hATTR varies with each patient, but the outlook holds promise for all. This booklet is designed as a comprehensive guide to help you and your family navigate treatment resources and options that would be most effective for you.
Hereditary transthyretin amyloidosis (hATTR) is a rare, systemic disease passed down through families. Caused by genetic mutations in the transthyretin (TTR) gene, it leads to a buildup of abnormal proteins called amyloid in one or more organs and tissues, impairing their function. Left untreated, hATTR can cause life-threatening complications. Early diagnosis and treatment are critical to prevent or delay progression of hATTR.
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.
Despite having many of the "red flag" symptoms of amyloidosis, Cece still experienced a delay in diagnosis. Cece shares her story, how a genetic condition has impacted her family, and how a heart transplant changed her life.
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.
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.
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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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.
Rebecca provides tips for communicating with healthcare professionals, including recommendations for how to create an end-of-life care plan with a healthcare team. Rebecca also discusses factors to consider when deciding which care option is best, while also providing resources for emotional support. In addition to discussing the stages of amyloidosis progression, Jill discusses the importance of end-of-life care, while addressing the challenges caregivers and patients may experience.
The presentation is followed by a Q and A section.
Original Presentation Date:
November 10, 2023
Key Webinar Highlights:
0:00 — Introduction
3:33 — Start of Rebecca’s presentation
4:40 — Importance of communicating with the healthcare team
12:55 — Person-centered communication is palliative care’s core competency
14:24 — Discussing preferences and preparing plans
17:04 — Medical decisions that may need to be made
19:08 — Person-centered care planning tools
25:57 — Palliative care is a lifeline for quality of life
27:28 — Start of Jill’s presentation
29:29 — Definition of palliative care
31:04 — Case-study example
33:24 — What is home health
34:33 — What is hospice?
36:38 — How palliative care is different than home health and hospice care
39:40 — Different modes of palliative care
40:31 — Common topics to discuss in palliative care
44:41 — Causes of death in cardiac amyloidosis
46:43 — Qualifications for home palliative care
47:36 — When to bring up palliative care
49:21 — How to bring up palliative care discussions
50:01 — Case study continued
52:32 — Presentation summary
54:06 — Q & A and close of webinar
Care Planning Guide
Starting a care plan can be overwhelming. The National Patient Advocate Foundation has designed this guide to make it easy for you to start your own care plan by helping you organize your thoughts about your health and well-being.
“Can We Talk About…” Practical Guides
A series of guides for patients and caregivers from the National Patient Advocate Foundation covering caregiving, preparing for a telehealth appointment, and talking about your needs with your healthcare team.
The “Hello” Game
Mentioned during the webinar, Hello is a conversation game. It’s an easy, non-threatening way to start a conversation with your family and friends about what matters most to you. The game is sold by a company called “Common Practice.”
Caregiver Intensity Score
Caregivers are the bedrock of our community. Supporting those we love is an honor, but it can also be intense. Do you know your Caregiver Intensity Score? Take a minute to check in on yourself and find out — you’ll find out you’re not alone in this and get connected to things that can help.
Palliative Care Guide
Most of the time, you have to ask your doctor for a palliative care referral to get palliative care services, but how do you do that and how should you prepare for that conversation? Learn more about talking with your doctor, finding a provider, and other Palliative Care tips from getpalliativecare.org.