Cardiac AL Amyloidosis Patients Experience Delays in Diagnosis
A survey of patients with all forms of cardiac amyloidosis and their caregivers was conducted in order to understand delays, errors, and inconsistencies in the diagnostic pathway for patients with cardiac amyloidosis and validated using caregiver responses. Data from AL...
Dr. Scott Gottlieb was appointed the new commissioner of the Food and Drug Administration (FDA) on May 11, 2017. He is a physician and a cancer survivor, having been successfully treated for Hodgkin’s lymphoma. Gottlieb has previously commented that the...
ARC held its biannual Industry Advisory Council meeting in Boston on March 27th, 2017. The day-long meeting was attended by representatives from pharmaceutical and biotech companies developing new treatments for amyloidosis. This provided a unique opportunity for these companies...
Rare disease day is on February 28th. The entire week provides a unique opportunity to raise awareness of key policy issues that affect amyloidosis. Patient organizations, NIH and other government entities, medical researchers, and pharmaceutical companies developing treatments for rare...
On December 13th, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. We are very grateful to Representatives Fred Upton (R-MI) and Diana DeGette (D-CO), as well as members of their staff, for...
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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.
Emily Brown addresses the importance of genetic counseling while sharing tips to support patients and family members on their journey of genetic counseling. In addition to giving an overview of hereditary ATTR amyloidosis, Dr. Masri discusses the link between hereditary ATTR amyloidosis and genetic predisposition. Dr. Masri also guides asymptomatic and symptomatic carriers with recommendations for monitoring disease progression and identifying symptoms.
The presentation is followed by a Q and A section.
Original Presentation Date:
March 30, 2023
Key Webinar Highlights:
0:00 – Introduction
4:30 – Emily’s Presentation Begins
6:41 – Intro to Genetic Counseling
17:32 – Testing Considerations
24:33 – Summary of Genetic Counseling Presentation
25:34 – Dr. Masri’s Presentation Begins
26:55 – Definition of Transthyretin Amyloidosis
27:12 – Definition of Hereditary Transthyretin Amyloidosis
32:00 – Scenarios of Hereditary Transthyretin Amyloidosis