Resources

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)

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

Dr. Nativi-Nicolau and Dr. Elizabeth Mauricio discussed the decision pathway in management of ATTR amyloidosis from the cardiac and neurological standpoint.

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.

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.

This quick summary of common "red flag" amyloidosis symptoms and diagnostic algorithm can help understand the steps in a traditional path to diagnosis and amyloidosis type determination. This tool should not be used to replace proper medical guidance and diagnosis, but can be helpful for understanding your journey to diagnosis.