The More Things Change, the More They Stay the Same
David Gibson,1 Kristen Hsu,1 James Signorovitch,2 and Isabelle Lousada1 1Amyloidosis Research Consortium, Newton, MA, USA; 2The Analysis Group Inc., Boston, MA, USA Amyloid transthyretin (ATTR) amyloidosis is a progressive, debilitating, and ultimately fatal disease caused by deposition of misfolded...
The Inflation Reduction Act: The Devil is in the Details for Patients with Rare Diseases
David Gibson, PhD, CMPP Director of Strategic Programs, Engagement, and Communications Amyloidosis Research Consortium The Inflation Reduction Act (IRA), signed into law on August 16, 2022, tackled a wide range of issues from tax reform, energy security, environmental and...
FDA Approves WAINUA™ (Eplontersen) for Treatment of Hereditary ATTR Amyloidosis Polyneuropathy
BREAKING NEWS: The U.S. Food and Drug Administration has approved AstraZeneca and Ionis’ WAINUA™ (eplontersen) for the treatment of the polyneuropathy of hereditary transthyretin-mediated amyloidosis in adults, commonly referred to as hATTR-PN or ATTRv-PN. WAINUA™ (eplontersen) is a Ligand-Conjugated Antisense...
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FDA Issues Complete Response Letter for Patisiran for Treatment of Cardiomyopathy of ATTR Amyloidosis
BREAKING NEWS: The U.S. Food and Drug Administration has issued a complete response letter for Alnylam Pharmaceuticals' Patisiran, an investigational RNAi therapeutic for the treatment of the cardiomyopathy of transthyretin-mediated (ATTR) amyloidosis. This letter denies approval for the treatment of...
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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 the role these might play in the future.
Original Presentation Date:
April 30, 2024
Key Webinar Highlights:
0:00 — Introduction
2:02 — Start of presentation
3:14 — Amyloidosis overview
5:59 — How do we diagnosis amyloidosis?
15:23 — Echocardiography overview
16:14 — MRI overview
17:42 — SPECT/PET nuclear imaging overview
18:48 — What are we imaging in cardiac amyloidosis?
32:07 — How do we use imaging in clinical care?
42:45 — The future of amyloid imaging
44:52 — Using imaging to track treatment changes
49:35 — Start of Q&A session
49:42 — What are NYHA classes? How early can imaging be used to diagnose amyloidosis?
52:15 — What do longitudinal strain numbers indicate?
54:19 — What should I know about Dr. Jon Wall’s work at the University of Tennessee and Attralus?
56:15 — What level of amyloid showing in imaging tests requires treatment?
58:52 — Can imaging techniques identify amyloid in peripheral nerves?