Webinar information
In collaboration with the Foundation Fighting Blindness and InformedDNA.
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The expanded My Retina Tracker® Program offers patients with inherited retinal degeneration (IRD) access to no-cost genetic testing and genetic counseling in the United States. In this webinar, we will provide an overview of how the program works, describe the genetic counseling services provided to patients, outline the data privacy and data sharing policies, as well as highlight the benefits of enrolling in the My Retina Tracker Registry. We will also provide an update on the new and updated Retinal Dystrophy Panel (‘My Retina Tracker’ Panel) offered through this program.
With over 6,000 patients tested to date, and hundreds more tested monthly, the program aims to continue to build the largest volume IRD genetic testing program in the United States.
This webinar is presented by Tero-Pekka Alastalo, MD, PhD, chief medical officer from Blueprint Genetics, Karmen Trzupek, MS, CGC, director, ocular and rare disease genetics services from InformedDNA, and Ben Shaberman, senior director, scientific outreach & community engagement from the Foundation Fighting Blindness.
Webinar objectives:
- Define the updated My Retina Tracker Program and why this program is the best choice for IRD patients
- Describe the updated panel and its strengths
- Outline data privacy and data sharing policies of the My Retina Tracker Program
- Explain the genetic counseling services included in the program
- Discuss the associated patient registry and the benefits of enrolling
Unable to attend live? By registering, you will receive a link to a recording of the webinar for you to watch at your convenience.
Speakers
Tero-Pekka Alastalo
Tero-Pekka is the Executive Director of Medical, and also a co-founder at Blueprint Genetics. He is based in San Francisco and holds various responsibilities in the North American operations of the company. Tero-Pekka has an MD-PhD degree and is specialized in pediatrics and pediatric cardiology. He has a PhD in molecular and cellular biology as well. During his 3-year postdoctoral training at Stanford University School of Medicine, he focused on the molecular genetic mechanisms of cardiovascular disease.
Karmen Trzupek
Karmen Trzupek, MS, CGC is the director of ocular and rare disease genetics services at InformedDNA. She has been a certified genetic counselor since 2005 and holds an MS in genetic counseling from Northwestern University. Karmen is passionate about increasing access to genetic services for patients with rare genetic diseases.
Ben Shaberman
Ben Shaberman is the Vice President of Science Communications at the Foundation Fighting Blindness. Ben has been communicating retinal disease science and research for the Foundation for nearly 18 years. He presents the latest news on emerging therapies at local and national events for patients and families and conducts a variety of science education activities for staff and constituents. Ben hosts the Eye on the Cure podcast series which is available on most major podcast platforms. In addition, he reports on the latest research advancements for the Foundation’s electronic and print publications. Ben also enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them. Ben has written three books – Retina Boy, Jerry’s Vegan Women, and The Vegan Monologues – all published by Loyola University (Maryland). He earned a Master of Arts in writing from Johns Hopkins University, a Master of Science in systems management from the University of Maryland, and a Bachelor of Science in computer information science from Cleveland State University.