FDA Approves Gene Therapy for RPE65 Retinal Disease

On December 19, 2017, the FDA approved Voretigene Neparvovec (Luxturna, Spark Therapeutics), a one-time gene therapy for patients with vision loss due to RPE65-related inherited retinal disease.

AAPOS has posted an information sheet for patients and families developed by the Genetic Eye Disease Task Force, the chair of which, Dr. Arlene Drack, and several  members are ISGEDR members.

For a short piece on the history of this treatment, visit the American Society for Gene and Cell Therapy at this link

For a CNBC piece on pricing of the drug visit this link

Additional helpful links for patient queries include:

XVIIIth International Symposium on Retinal Degeneration. September 3-8, 2018. Killarney, Ireland

The Travel Award application site is open now until the Deadline – May 18, 2018

Registration & Abstract submission site is now open. Abstract Deadline – June 29, 2018

See more information on our Resources Page

Professor Irene Hussels Maumenee receives the American Academy of Ophthalmology Laureate Award


The AAO honored Professor Maumenee with its highest possible award at the annual meeting in New Orleans in November, 2018. Professor Maumeneefounded ISGED (now ISGEDR) in 1978 together with Professors Cotlier of New York and Ohba from Japan. The first meeting was held in Tokyo in 1978. The society has met every two years since.

ISGEDR extends its warm and sincere congratulations to Professor Maumenee.


Read About it here

Read About it and watch a video interview with Professor Maumenee here

Very Successful Joint ISGEDR-UK EGG Meeting in Leeds, UK

Close to 200 delegates got together at the  Rose Bowl in Leeds in the Sagar Wright Lecture Theatre  for 3 days to share information about the diagnosis and management of genetic diseases of the eye and about retinoblastoma. The program was comprised of symposia, free paper sessions, case presentations, posters and 4 named Lectures.

News, Articles and Other Information About the Meting

Geoff Cross Wrote

Travel Grants

The International Society for Genetic Eye Diseases and Retinoblastoma has given 4 travel grants of $1500.00 and free registration at the meeting to the following individuals:

Adam Ali

Medical Student

University College London


Evangelia Panagiotou

Resident in Ophthalmology

University Department of Ophthalmology

AHEPA Hospital

Thessaloniki, Greece

Lev Prasov

Resident in Ophthalmology

University of Michigan


Raquel Sofia Silva

Post-Doctoral Fellow

University College London



Congratulations to all the recipients.





Register and Submit Abstract

Deadline for Abstract Submission has been extended to July 15, 2017

Early Bird Registration Ends August 15, 2017

pdf ISGEDR-UKEGG Accommodation and Travel Details