Resources Category: Patients

These two webinars provide detailed information about how to manage systemic amyloidosis during the time of the COVID-19 pandemic. They include the International Society of Amyloidosis Guidelines, high risk patient considerations, an update on clinical trials, policy changes that affect care and reimbursement of treatments. Click title to watch: PATIENT WEBINAR: How to manage your amyloidosis during COVID-19 PHYSICIAN WEBINAR: Managing amyloidosis patients during COVID-19

As many more provider visits are being conducted virtually, it is important that you are setup and well prepared ahead of time. This video will take you through all the steps.

In this patient webinar, Mayo Clinic's occupational therapist Sarah Dahlhauser, OTD, OTR/L, and physical therapist Sarah Boyd, PT, DPT, discuss exercise principles for maintaining mobility and function, and home modifications for improved safety for amyloidosis patients.

Genetic counselors Emily Brown and Katelyn Swade give an overview of the science of genetic testing and the importance of genetic counseling for ATTR patients.  

In this video patients share their experiences of living with AL and ATTR amyloidosis. They discuss the needs for research, clinical trials and their dreams. This video was shared with the FDA in 2015 during ARC's Patient Focused Drug Development Meeting.

This webinar provides information on navigating work and amyloidosis. Covering the laws that can protect you as you work through treatment, taking job protected time off if necessary, and how to pay for time off. This webinar will be hosted on 7th November at 11am EST. Use link below to register.

This webinar provides helpful information on what to consider when choosing a healthcare insurance plan. This webinar was hosted by Triage Cancer and funded by Alnylam Pharmaceuticals.

An informative webinar, led by speaker Beth Halpern, Partner at Hogan Lovells US LLP, providing a detailed explanation of the different pathways available to support patients in accessing these new treatments