- Видео 70
- Просмотров 117 389
Amyloidosis Research Consortium (ARC)
Добавлен 15 дек 2017
The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases.
ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers.
ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. Working with partners in industry, government, and academia, ARC seeks to spark innovation and to bring promising treatments from labs to clinics. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers.
ARC TALKS Webinar GI Disturbances and Symptom Management
In this ARC TALKS webinar Dr. Sara Horst, Professor of Medicine in the Division of Gastroenterology, Hepatology and Nutrition at Vanderbilt University Medical Center, will discuss how amyloidosis can impact the gastro intestinal tract, GI symptoms, and symptom management. Dr. Horst will also explore when patients should consult with a GI specialist.
The webinar will conclude with a Q & A session.
This webinar was original presented on July 22, 2024.
0:00 - Intro
3:35 - Amyloidosis & GI Symptoms
7:05 - Diagnosis
12:26 - VUMC Experiences
14:51 - Treatment Overview
16:27 - Upper GI Symptom Treatment
20:07 - Diarrhea Treatment
24:24 - SIBO Treatment (Small Intestinal Bacterial Overgrowth)
26:09 - Consti...
The webinar will conclude with a Q & A session.
This webinar was original presented on July 22, 2024.
0:00 - Intro
3:35 - Amyloidosis & GI Symptoms
7:05 - Diagnosis
12:26 - VUMC Experiences
14:51 - Treatment Overview
16:27 - Upper GI Symptom Treatment
20:07 - Diarrhea Treatment
24:24 - SIBO Treatment (Small Intestinal Bacterial Overgrowth)
26:09 - Consti...
Просмотров: 452
Видео
ARC TALKS Webinar: Clinical Trial Updates for the ATTR Community
Просмотров 5072 месяца назад
In this ARC TALKS webinar, ARC's own Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on ATTR amyloidosis. Kristen will also explored the direction future research. The webinar concluded with a Q and A session. This webinar was original presented on June 20, 2024. 0:00 - Intro 4:19 - What is a Clinical Trial? 8:06 - Should I Participate in a Trial? 1...
ARC TALKS Webinar: Physical Therapy for Amyloidosis Management
Просмотров 5333 месяца назад
In this ARC Talks webinar, physical therapists Kelsi Schiltz, and Katie Johnson provided recommendations for managing neuropathy symptoms. Discussion included daily exercises to help mitigate symptoms, what to expect during a physical therapy appointment, and the benefits physical therapy can provide for amyloidosis patients. 0:00 - Intro 2:31 - Overview 4:56 - What Is Physical Therapy? 10:23 -...
ARC TALKS Webinar: Visualizing Amyloidosis - The Role of Imaging
Просмотров 7124 месяца назад
In this ARC Talks webinar for patients, Dr. Sharmila Dorbala explained the role that medical imaging techniques play in both diagnosing and managing amyloidosis. We also explored the role of PYP scans, EKG, and Echocardiogram imaging as well as their interpretation and limitations. Dr. Dorbala will also highlighted novel imaging techniques for amyloidosis that are currently being studied and th...
ARC TALKS Webinar: Devices for Heart Improvement
Просмотров 4036 месяцев назад
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 ...
ARC TALKS Webinar: An ARC Fireside Chat
Просмотров 2688 месяцев назад
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. View the webinar recording to gain firsthand knowledge about the projects successfully accomplished in 2023 and get a sneak peek into the exciting new initiatives poised to shape our mi...
ARC Talks Webinar: Navigating Care Choices at the End of Life
Просмотров 3019 месяцев назад
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 ...
Dawn - hATTR Amyloidosis Patient
Просмотров 1,5 тыс.10 месяцев назад
Dawn 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.
Alison - AL Amyloidosis Patient
Просмотров 1,5 тыс.10 месяцев назад
Alison describes her transition from being a nurse to being a patient, her journey to diagnosis, undergoing a bone marrow transplant and chemotherapy, and advice for others living with AL amyloidosis.
ARC Talks Webinar: Knowing Your Rights: Understanding Health insurance Coverage
Просмотров 31311 месяцев назад
In this ARC talks webinar, Alicia Lawrence, Information and Resource Services Manager at the National Organization for Rare Disorders (NORD), discusses health insurance policies within private and government issued insurance. In addition to discussing policies regarding appeals, prior authorization, and law changes by state, Alicia provides guidance for application submissions with key tips and...
ARC TALKS Webinar: Kidney Disease Presentation in Amyloidosis
Просмотров 1 тыс.Год назад
In this ARC Talks Webinar, Dr. Nelson Leung focuses on renal involvement in AL, AA, ALECT2 and ATTR amyloidosis, while discussing treatment and response assessments for each type. 0:00 Introduction 2:30 Start of presentation 3:03 Kidney involvement in AL amyloidosis 15:30 Kidney involvement in in AA amyloidsis 20:34 Kidney involvement in in Alect-2 24:37 Kidney involvement in wild type amyloido...
ARC Talks Webinar: Cardiac and Neurological Approaches in ATTR Management
Просмотров 943Год назад
In this ARC TALKS webinar, Dr. Nativi-Nicolau and Dr. Elizabeth Mauricio discussed the decision pathway in management of ATTR amyloidosis from the cardiac and neurological standpoint. Watch the recording to learn more about interdisciplinary approaches to ATTR amyloidosis care. 0:00 - Introduction 3:24 - Management of TTR amyloidosis (cardiac approaches) 8:37 - Constellation of symptoms checkli...
3D Video Understanding AL Amyloidosis
Просмотров 2,8 тыс.Год назад
AL amyloidosis involves proteins called light chains. These light chains make up part of the structure of immunoglobulins (antibodies) which play an important part in the immune system. They are produced by plasma cells in the bone marrow. In AL amyloidosis, abnormal plasma cells make excessive amounts of abnormal light chain proteins. Instead of forming immunoglobulin, they become misfolded an...
3D Video Understanding ATTR Amyloidosis
Просмотров 9 тыс.Год назад
In ATTR amyloidosis, abnormal, unstable Transthyretin (TTR) proteins readily misfold, forming aggregates which deposit as "amyloid" in various organs and tissues in the body. TTR is mostly made in the liver. Its role is to transport the hormone thyroxine and retinol (Vitamin A) around the body, hence its name transthyretin. Hereditary ATTR amyloidosis is caused by a fault or mutation in the tra...
Understanding Amyloidosis - 3D Animation & Overview
Просмотров 8 тыс.Год назад
The number of people diagnosed each year with some form of amyloidosis is still unclear. The estimated incidence of AL amyloidosis is 12 new cases per million of the population per year, with a prevalence of between 30-45,000 cases. The estimated prevalence of hereditary ATTR is between 5-10,000 people. Wild-Type ATTR amyloidosis is considered to be extremely under-diagnosed, and the real incid...
ARC Talks Webinar: Approaches to Treating Relapsed and Refractory AL Amyloidosis
Просмотров 721Год назад
ARC Talks Webinar: Approaches to Treating Relapsed and Refractory AL Amyloidosis
The Amyloidosis Forum | June 21, 2023 | Afternoon Sessions
Просмотров 704Год назад
The Amyloidosis Forum | June 21, 2023 | Afternoon Sessions
The Amyloidosis Forum | June 21, 2023 | Morning Sessions
Просмотров 1,1 тыс.Год назад
The Amyloidosis Forum | June 21, 2023 | Morning Sessions
ARC Talks Webinar: Clinical Trials 101 and Advances in Research
Просмотров 678Год назад
ARC Talks Webinar: Clinical Trials 101 and Advances in Research
ARC Legacy Giving - The Ruehlman Fund for Amyloidosis Research
Просмотров 474Год назад
ARC Legacy Giving - The Ruehlman Fund for Amyloidosis Research
Hereditary ATTR Amyloidosis: The Role of Genetic Testing and Recommendations for Genetic Carriers
Просмотров 710Год назад
Hereditary ATTR Amyloidosis: The Role of Genetic Testing and Recommendations for Genetic Carriers
Ralph - Wild-Type Amyloidosis Patient
Просмотров 3,8 тыс.Год назад
Ralph - Wild-Type Amyloidosis Patient
ARC Talks Webinar: The Role of Stem Cell Transplants in AL Amyloidosis Treatment
Просмотров 721Год назад
ARC Talks Webinar: The Role of Stem Cell Transplants in AL Amyloidosis Treatment
About the Amyloidosis Research Consortium (ARC)
Просмотров 735Год назад
About the Amyloidosis Research Consortium (ARC)
ARC Talks Webinar: Overview of ARC’s Research Programs and Results of the Patient Community Survey
Просмотров 272Год назад
ARC Talks Webinar: Overview of ARC’s Research Programs and Results of the Patient Community Survey
ARC Talks Webinar: Current ATTR landscape: Treatments and Trials
Просмотров 3,2 тыс.Год назад
ARC Talks Webinar: Current ATTR landscape: Treatments and Trials
The Amyloidosis Forum | November 18, 2022 | Afternoon Sessions
Просмотров 392Год назад
The Amyloidosis Forum | November 18, 2022 | Afternoon Sessions
The Amyloidosis Forum | November 18, 2022 | Morning Sessions
Просмотров 676Год назад
The Amyloidosis Forum | November 18, 2022 | Morning Sessions
ARC TALKS: Amyloidosis & Nutrition: Eating for Your Health
Просмотров 3,4 тыс.Год назад
ARC TALKS: Amyloidosis & Nutrition: Eating for Your Health