Resources

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.

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.

In this ARC TALKS webinar, cardiologist Dr. Ahmad Masri MD, MS and genetic counselor Emily Brown, MGC, CGC discuss the role of genetic testing in hereditary ATTR amyloidosis care, along with providing disease management recommendations for genetic carriers.

Sean, a patient with hereditary ATTR amyloidosis, describes his journey to diagnosis. Over an agonizing seven-year journey to diagnosis, Sean received bilateral carpal tunnel surgery, a hospital trip after a dire cardiac event, and saw multiple doctors fail to diagnose his amyloidosis. In his story, Sean shares the reason he is optimistic about the future and advice he has for others living with hereditary ATTR amyloidosis or still searching for a diagnosis.    

Ralph, a patient with Wild-Type ATTR amyloidosis, describes his journey to diagnosis. A commercial and technical diver, Ralph’s bilateral carpal tunnel was often attributed to his career. After multiple doctors misdiagnosed Ralph, one physician sent a tissue sample out for a biopsy, which led to Ralph’s amyloidosis diagnosis. From there, a journey of self-education, empowerment, and treatment have helped him take on amyloidosis and keep living, despite the challenges of this difficult disease.    

In this ARC Talks webinar, Sandy Wong, MD, and Nancy Wong, NP, discuss autologous stem cell transplantation as a therapy choice for AL amyloidosis patients. Dr. Wong outlines each phase of the process and goes over the function of stem cell transplants in the context of medical care. Nancy Wong discusses how to prepare for a stem cell transplant while highlighting key care considerations for each phase of therapy. Her concluding remarks focus on important considerations during the recovery period.

In this ARC Talks webinar, Kristen Hsu, Executive Director of Research, and Sabrina Rebello, Research Manager, provide an overview of ARC’s research programs, share findings from our 2022 community survey results, and highlight the future direction of ARC’s research.