Our Commitment to Patients

Patients are at the center of all we do

Patients and their families inspire us daily in our search for new, breakthrough therapies that will make a real difference in the health and daily lives of those with rare inherited conditions in ophthalmology, neurodegenerative disease and otology.

As part of our commitment to learning from patients and families, AGTC has established a Patient Advisory Council made up of individuals with inherited retinal diseases (IRDs) and leaders of the organizations that represent them.  The council provides valuable insights about the unique journey and experiences of living with IRDs. Their contributions are critical to guiding our clinical trial design process, providing education and support to patients, and delivering high-value solutions throughout the patient journey.

AGTC Patient Advisory Council is made up of people either living with or parents of people living with an Inherited Retinal Disease and are members of:

Retina International

A global patient-led umbrella organization dedicated to promoting research into rare and inherited as well as age-related forms of retinal degenerative conditions.

Foundation Fighting Blindness

The world’s leading private funder of retinal disease research. That funding has been a driving force behind the progress toward cures, including the identification of more than 270 genes linked to retinal disease, and the launch of 42 clinical trials for potential treatments.

Fighting Blindness Canada

Canada’s leading private funder of vision research. They offer hope to Canadians by identifying the best, most promising research that is driving treatments and cures for blinding eye diseases, and by raising and stewarding funds to support this essential, sight-saving research.

Sofia Sees Hope

A patient advocacy organization dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and rare inherited retinal disease communities.