Data sharing. It is an important topic and there is a real need for it in our community. Data sharing encourages more connection and collaboration among researchers, which can result in important new findings within the field. (more…)
For the third year running, ARC is supporting a CME Satellite Symposium at the Heart Failure Society of America (HFSA) conference. "Avoiding the pitfalls of diagnosing and treating cardiac ATTR amyloidosis" will be held on Sunday evening, September 15, at...
Publication of cardiac ATTR amyloidosis diagnosis guidelines
ARC-supported consensus best practices guidelines for the diagnosis of cardiac ATTR amyloidosis published in the journal of the American Heart Association, Circulation:Heart Failure. (more…)
Opportunity to Advance hATTR Amyloidosis Research from Home
Prothena has teamed up with Sanguine, a provider of at-home clinical research services, to give you the opportunity to help advance hATTR Amyloidosis research from home. (more…)
FDA appoints Public Private Partnership Liaison to ARC
To focus on the challenges faced by AL amyloidosis, a particularly complex and multi-systemic disease, and bridge the gaps in drug discovery and development . (more…)
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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.
The webinar concluded with a Q and A session.
Original Presentation Date:
December 18, 2024
0:00 — Intro
2:01 — Shaping ARC’s Purpose
5:03 — Research Overview
7:28 — The Amyloidosis Forum
9:23 — Healthcare Professional Survey
10:40 — Amyloidosis Community Survey
14:00 — CASE: Community and Stakeholder Engagement Overview
17:09 — Patient Support & Patient Programs
20:05 — Healthcare Provider Programs
23:54 — My Amyloidosis Pathfinder (MAP)
26:44 — ASPIRE: Amyloidosis Stakeholder Partnerships for Impact, Reach and Equity
31:29 — Development & Communications Overview
35:51 — Communications Highlights
38:36 — Development Highlights
40:48 — Q&A Session
41:43 — How do I stay informed about amyloidosis clinical trials?
43:43 — What can do if I’m too well for a clinical trial?
47:03 — What can be done for rarer types of amyloidosis?
50:36 — How does ARC engage with healthcare clinics and treatment centers?
52:48 — How does ARC impact rare diseaes public policy?
54:24 — How can people help ARC and the amyloidosis community?