Fundación Síndrome de Usher

Save Sight Now Europe is a non-profit organisation dedicated to accelerating the development of treatments for Usher syndrome type 1B (USH1B), a rare genetic disease caused by mutations in the MYO7A gene that leads to congenital profound hearing loss, vestibular (balance) dysfunction, and progressive blindness due to retinitis pigmentosa.
Our primary purpose is to fund and support scientific research aimed at preventing vision loss in people affected by USH1B, with the secondary goals of advancing treatments for the associated balance disorder and, ultimately, for the underlying hearing loss. To pursue this mission, we (i) provide research grants to leading academic and clinical research groups in Europe and through international partnerships, (ii) facilitate collaboration between scientists, clinicians, patients, and patient organisations, and (iii) raise public awareness and educate the broader community about USH1B and the urgent need for treatment.
The organisation operates exclusively for public benefit. It has no commercial purpose, distributes no profits, and directs all funds raised toward research and awareness activities that serve patients and families affected by Usher syndrome 1B across Europe and beyond.