Resources

Dr. Sarah Cuddy, cardiologist at Brigham and Women's Hospital, explored the basics of amyloidosis. She presented an introduction to amyloidosis, the different types, and the available treatments. The webinar concluded with a Q&A session.

Rebello, S., Hsu, K., Nativi-Nicolau, J., Karam, C., Grogan, M., Lousada, I., & Maurer, M. S. (2025). Factors associated with financial toxicity in patients with transthyretin amyloidosis: results from Amyloidosis Research Consortium’s treatment affordability patient and caregiver survey. Amyloid, 1–10. https://doi.org/10.1080/13506129.2025.2462541

Signorovitch J, Zhang J, Brown D, Dunnmon P, Xiu L, Done N, Hsu K, Barbachano Y, Lousada I. Pathway for Development and Validation of Multi-domain Endpoints for Amyloid Light Chain (AL) Amyloidosis. Ther Innov Regul Sci. 2024 Jul;58(4):600-609. doi: 10.1007/s43441-024-00641-6. Epub 2024 Apr 17. PMID: 38632158; PMCID: PMC11169055.

Leung N, Comenzo R, Gillmore J, Havasi A, Kastritis E, Guthrie S, Signorovitch J, Heath D, Lousada I; Amyloidosis Forum Working Group Participants. Renal Response Criteria for Clinical Trials in Amyloid Light Chain Amyloidosis. Kidney Int Rep. 2024 Apr 4;9(7):1986-1994. doi: 10.1016/j.ekir.2024.03.033. PMID: 39081759; PMCID: PMC11284377.

ARC Executive Director of Research Kristen Hsu presented the most current updates for the clinical trial landscape, with a focus on ATTR amyloidosis. Kristen will discussed the direction of future research. The webinar concluded with a Q&A session.

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.

In honor of National Family Caregivers Month, ARC hosted a discussion between Debra Ruehlman, amyloidosis family caregiver, and Ann Payne, MSW, ARC Clinical Care and Education Manager. This webinar explored topics such as self care, self advocacy, and community resources.

Covering information on Medicare basics, choosing a Part D plan, and coverage gaps, ARC was joined by Sylvia Gary from the Centers for Medicare and Medicaid Services (CMS).