Resources

Dawn, a patient with hereditary ATTR amyloidosis, 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.    

In this ARC talks webinar, Alicia Lawrence, Information and Resource Services Manager at the National Organization for Rare Disorders (NORD), discussed health insurance policies within private and government issued insurance.

Mauermann, M.L., Clarke, J.O., Litchy, W.J. et al. Adv Ther (2023)

In this ARC Talks Webinar, Dr. Nelson Leung focused on renal involvement in AL, AA, ALECT2 and ATTR amyloidosis, while discussing treatment and response assessments for each type.

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.

In this ARC TALKS webinar, Dr. Heather Landau discussed current treatment options for relapsed and refractory AL amyloidosis patients. Dr. Landau also talked about the current testing methodology used to monitor a patient’s disease status, and the role maintenance therapy may play in the management of relapsed AL amyloidosis.

In this ARC Talks Webinar, Dr. Morie Gertz gave a 101 overview of clinical trials, including consideration in how they are designed, and the phases needed for drug development. Dr. Gertz also discussed current clinical trials that are evaluating the next generation of drugs for the treatment of AL and ATTR amyloidosis.

Rizio AA, White MK, D’Souza A, Hsu K, Schmitt P, Quock TP, Signorovitch J, Lousada I, Sanchorawala V. Health-Related Quality of Life Instruments for Clinical Trials in AL Amyloidosis: Report from the Amyloidosis Forum HRQOL Working Group. Patient Relat Outcome Meas. 2023 May 18;14:153-169. doi: 10.2147/PROM.S399658. PMID: 37229285; PMCID: PMC10202704.