Webinars
Introducing an open access genetic testing program for patients with inherited retinal degeneration
Oct 15, 2019
Webinar information
Date: 24.10.2019
Time: 12:00pm-1pm EST
Duration: 1 hour
Speaker: T. Alastalo, K. Trzupek, B. Shaberman

In collaboration with the Foundation Fighting Blindness and InformedDNA.

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 Alastalo, PhD, MD is Chief Medical Officer and co-founder of Blueprint Genetics. He is based in San Francisco and in charge of North American operations. 

Karmen Trzupek

Karmen Trzupek, MS, CGC is the director of Ocular and Rare Disease Genetics Services at InformedDNA. She is a certified genetic counselor since 2005 and holds a 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 Senior Director, Scientific Outreach & Community Engagement at the Foundation Fighting Blindness. He is a writer and an author (Retina boy, 2019) and a passionate advocate for people living with inherited retinal disease. He earned a Master of Arts in writing (poetry) from Johns Hopkins University, a Master of Science in systems management from the University of Maryland University College, and a Bachelor of Science in computer science from Cleveland State University.