ASG ATTR Webinar, January 21, 2023

Amyloidosis Support Groups ATTR Amyloidosis Webinar, January 21, 2023
(Note: This video of the webinar has been edited for content and time.)

Moderater: Muriel Finkel, President, Amyloidosis Support Groups
Participants:
Mathew S. Maurer, MD, Cardiologist, Director, Cardiac Amyloidosis Center, Professor of Medicine, Columbia University Medical Center
Chafic Karam, MD, Neurologist, Associate Professor of Neurology, University of Pennsylvania
*Joy Olbertz, PharmD, PhD, Senior Director, Clinical Scientist, Intellia Therapeutics
*Anne Ersbøll MD, PhD, Senior Global Medical Manager, Global Medical Affairs, Cardiovascular Diseases, Novo Nordisk
*Gustavo Buchele, MD, PhD, Executive Director, Clinical Development, Ionis Pharmaceuticals
Craig Spolsky, Advocacy & Professional Relations Director, Pfizer, Inc.
*Steven Roblin, PhD, US Medical Director, Alnylam Pharmaceuticals
Jocelyn Ashford, Vice President, Patient Advocacy, BridgeBio Pharma
Paula Schmitt, Executive Director, Amyloidosis Support Groups

*Presentations and discussions by these participants were only authorized for use during the live webinar, not for publication on YouTube. Their contributions have been removed from this video.

Chapters
0:00 Welcome and Introduction of Participants
3:24 ATTR Treatment Chart
3:52 Dr. Mat Maurer, Systemic Amyloidosis
27:14 Dr. Chafic Karam, Neurological Complications of ATTR Amyloidosis
56:55 Q&A Session One
1:36:24 Muriel Finkel, Info on the 2023 ASG ATTR Patient Conference this October
1:38:17 Paula Schmitt, Patient Support and Financial Assistance
1:48:25 Jocelyn Ashford, BridgeBio Update
1:50:44 Craig Spolsky, Update on Pfizer Patient Affairs Liaisons for ATTR
1:56:36 Q&A Session Two

Amyloidosis support resources referenced during the webinar
ATTR TREATMENT CHART
https://drive.google.com/file/d/1UqDG...

ASG FACEBOOK GROUPS
for ATTRv
  / hattr  
ATTRwt -   / 1487530094602375  

Do you have a family member that needs to be tested for ATTRv? FREE GENETIC TESTING IS AVAILABLE at
https://www.invitae.com/en/alnylam-ac...
https://www.hattrcompass.com/

ASSISTANCE WEBSITES FOR TREATMENTS
www.akceaconnect.com
www.AlnylamAssist.com
www.vyndalink.com
In
Canada: https://www.pfizer.ca/assistance-prog...

ATTR FINANCIAL ASSISTANCE
fundfinder.panfoundation.org
www.panfoundation.org
www.tafcares.org
www.healthwellfoundation.org

MENTAL HEALTH SUPPORT
NAMI Website: www.nami.org
NAMI HelpLine: 800-955-6264
https://www.nami.org/About-Mental-Ill...

CONTACTS FROM PHARMA PRESENTATIONS
Amvuttra Start Form: www.amvuttrahcp.com
BridgeBio contact for more information: [email protected]
Pfizer contacts for patients and caregivers: togetherforrare.com
Vyndalink.com, 1-888-222-8475 8 am -8 pm