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.
🧡 Calling all amyloidosis patients and caregivers! Your voice matters. We invite you to take part in our brief survey designed to understand your experiences and needs. Your insights will help us improve care and support for the amyloidosis community.
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?
56:25 — Concluding Remarks
Contact ARC:
Call +1 (617) 467-5170
Email ARC at support@arci.org
