Living with a Retinal Dystrophy: Tools to Help You Thrive

Retinal dystrophies such as Retinitis Pigmentosa, Stargardt disease, cone dystrophy, choroideremia, Usher syndrome, and others can have a significant impact on the lives of individuals with these conditions. This full-day meeting will bring together patients and families living with retinal dystrophies with leading physicians, researchers, genetic counselors, low vision experts, mental health providers, education specialists, and vocational support personnel to empower patients on their journey.

Meeting Information

Living with a Retinal Dystrophy: Tools to Help You Thrive
Saturday, October 19, 2019
9:00 am to 5:30 pm, with registration and continental breakfast beginning at 8:15
Kellogg Eye Center
1000 Wall Street
Ann Arbor, MI

Intended Audience

Patients with retinal dystrophies (Retinitis Pigmentosa, Stargardt disease, cone dystrophies, cone-rod dystrophies, Usher syndrome, etc) and their family members or companions

Older children (ages 12+) are welcome to attend.

All attendees (patients, family members, and companions) must register.

Meeting Goals

  • Connect patients and families with each other
  • Explore available social, educational, low vision, and vocational support that can help patients and families thrive
  • Provide updates on retinal dystrophies and developing treatments such as gene therapy and stem cell therapy

Meeting Agenda

  • 8:15 am: Registration and Continental Breakfast
  • 9:00 am: Morning Session I - All about retinal dystrophies (RDs)
    Information about RDs, genetic testing options, and emerging research
  • 10:40 am: Break
  • 11:00 am: Morning Session II - What is being done to help
    Information on clinical research and trials, including gene therapy and stem cell therapy
  • 12:10 pm: Lunch
  • 1:10 pm: Afternoon Session I: Low vision devices and technology
    Advances in low vision, driverless cars, guide dogs, and orientation and mobility training
  • 3:00 pm: Break
  • 3:20 pm: Afternoon Session II: Community resources
    Education and vocational resources, patient panel discussion
  • 5:00 pm: Patient social
  • 5:30 pm: Adjourn

Register for this Meeting

Registration for this meeting is closed.