My Retina Tracker, the Global Patient Registry Developed by the Foundation Fighting Blindness, to be Featured at the 2018 Rare Patient Advocacy Symposium
Ben Shaberman will discuss how data enhances the research value of FFB’s patient registry for people with inherited retinal diseases
COLUMBIA, MD – May 17, 2018 – Ben Shaberman, senior director of communications at the Foundation Fighting Blindness (FFB), will present an overview of the global, patient-driven registry for inherited retinal diseases, available at www.MyRetinaTracker.org, during the 2018 Rare Patient Advocacy Symposium on May 19, 2018, at the Sheraton University City Hotel in Philadelphia. Shaberman will be participating in Session #3.2: Why and How Should We Expand the Data in Our Registry? to be held from 10:30 – 11:15 a.m. ET.
Global Genes, in partnership with the Penn Medicine Orphan Disease Center, is hosting the 3rd annual Rare Patient Advocacy Symposium in which rare disease stakeholders will come together for a one-day program to learn, connect, and be inspired. This year's program will focus on rare disease research, drug development, and the patient advocacy organization's role in the process.
“My Retina Tracker has evolved and grown over the last three years to become an invaluable research asset for companies and investigators developing treatments for inherited retinal diseases,” said Jason Menzo, FFB’s chief operating officer.
“I am privileged to be sharing an overview of our successes and challenges with My Retina Tracker with other patient advocates for rare diseases,” added Shaberman.
My Retina Tracker is a free online registry provided by FFB as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases.
My Retina Tracker is designed with state-of-the-art database technology to protect patient privacy. Data in the registry is only accessible to the participants, FFB registry staff, and appropriately qualified researchers who have applied to FFB through a rigorous scientific review process for access to the data for research or to help accelerate clinical trial enrollments.
The mission of the Foundation Fighting Blindness is to drive the research that will bring an end to the entire spectrum of retinal degenerative diseases including: retinitis pigmentosa, age-related macular degeneration, Stargardt disease, and Usher syndrome. The conditions affect more than 10 million people in the U.S. and 150 million people worldwide. In addition to funding research at prominent academic labs, FFB is partnering with biotechs and pharmaceuticals to advance emerging therapies into and through clinical trials and out to the people who need them. Visit www.FightBlindness.org for the latest information on retinal disease research. Follow the Foundation on Facebook and Twitter.
Contact: Lauren Moyer