Rare Disease Resources

Vision Loss Resources

NEI Information for patients and families living with rare eye disorders

My Retina Tracker Registry – Open Access Genetic Testing Program hosted by Foundation Fighting Blindness

Usher Syndrome Resources

Rare Disease Resources

Once Upon a Gene Podcast– True stories of raising rare kiddos, hosted by Effie Parks

Global Genes- Clinical Trials


Understanding Drug Development– Global Genes RARE University course

Gene Therapy 101

The American Society of Cell and Gene Therapy (ASGCT) Youtube channel– a great educational resource to learn more about gene therapy

U.S. Food and Drug Administration (FDA)- Gene Therapy Inside Out (video)

National Organization for Rare Disorders– Gene Therapy Your Questions answered (video)

Questions? We’re here to help!