We are pleased to announce a new, live video education session for families facing an amyloidosis diagnosis. On Tuesday, January 21, 2020 at 1:30pm ET, head to NeuroCareLive to find All About hATTR Amyloidosis: Patient Experience and Actino on Testing and Care, presented in collaboration with the Amyloidosis Support Groups.
This interactive program features real time Q&A, interactive audience polling and a live conversation between a cardiologist, neurologist, patient advocate, and genetic counselor about this rare disorder – panelists for this special 90-minute session include:
Janice Wiesman, MD, FAAN, is a clinical associate professor of neurology at NYU School of Medicine, attending physician at Bellevue Hospital in New York, New York, and adjunct assistant professor of neurology at Boston University School of Medicine in Boston, Massachusetts.
Frederick L. Ruberg, MD, is associate professor of medicine and radiology at Boston University (BU) School of Medicine and clinical cardiologist at Boston Medical Center (BMC) in Boston, Massachusetts.
Emily Brown, MGC, CGC, is a certified genetic counselor in the Center for Inherited Heart Diseases at Johns Hopkins Hospital in Baltimore, Maryland. Her specialty is patients with hereditary transthyretin amyloidosis, and she has participated in multiple research studies and drug trials related to this condition.
Muriel Finkel, co-founder of Amyloidosis Support Groups (ASG), was a caregiver for her uncle, who had amyloidosis, in the 1990s and early 2000s. Muriel and her husband started ASG in 2004 as a way for patients, caregivers, and those who had lost loved ones to amyloidosis to connect over their experiences.
Sean Riley, adjunct professor of Nuclear Engineering Technology residing in Boston, was diagnosed with hereditary amyloidosis after facing several years of symptoms. He wants to help educate the medical community so future patients can be diagnosed and treated at a much earlier stage of disease progression.
Together, the panelists will discuss:
- The genetics behind amyloidosis
- How to work with doctors to tell if you or your loved one should seek genetic testing for amyloidosis
- How to talk with family members about the importance of genetic testing if a direct relative has already been diagnosed
- Working with a genetic counselor throughout the genetic testing process
- Locating tools and resources to help manage amyloidosis
Support for this patient education program was provided by Alnylam.