The reConnect Institute is proud to partner with Save Sight Now Europe (SSNEU), a nonprofit organization dedicated to supporting research and the development of treatments for Usher syndrome type 1B (USH1B), a rare genetic disorder that affects hearing, balance, and vision simultaneously.
Usher syndrome is the most common cause of hereditary deafblindness and affects approximately 700,000 people worldwide. There are three main clinical forms of the disease. Type 1, the most severe form (about 40% of cases), is characterized by profound hearing loss present from birth, balance disorders, and retinitis pigmentosa leading to progressive vision loss. Among the genes responsible for this form, the MYO7A gene causes Usher syndrome type 1B, which is the focus of the project supported by SSNEU.
Joining Forces to Accelerate the Path to Clinical Research
As part of this partnership, Save Sight Now Europe—co-led by Sandrine Vitry and Aziz El-Amraoui within the Progressive Sensory Disorders, Pathophysiology, and Therapy team at the reConnect Institute—is providing financial support for a project. The goal is to develop a gene therapy approach for USH1B and to evaluate its effectiveness in treating the sensory impairments associated with the disease. This collaboration reflects the ambition to take key steps toward bringing this approach closer to future clinical application. SSNEU also supports several international programs focused on the mechanisms of the disease and the development of gene therapies.
Founded by parents who were directly confronted with their child’s diagnosis, SSNEU now brings together families, researchers, and partners around a common goal: to accelerate research to preserve the vision of children with USH1B. This partnership between the foundation and the reConnect Institute also supports a new initiative led by the foundation, which is preparing a Europe-wide fundraising campaign to support and accelerate research on this disease.
More information about the activities of the Save Sight Now Europe Foundation:
Save Sight Now Europe | Usher Syndrome Type 1B Research
