Patient resources
AAVantgarde are pleased to partner with patient advocacy groups around the globe and those providing informative resources and support for people with Usher Syndrome and Stargardt disease.
Explore the links below to find out more.
Links on this page may direct you to external websites such as the FDA, NIHR, or NHS. These organisations are not affiliated with AAVantgarde, and we are not responsible for the content on their sites.
FARPE is a Spanish federation representing patient associations to support people with hereditary retinal dystrophies and promote research and awareness.
Fighting Blindness Canada is Canada’s leading charity funder of vision research, advancing new treatments while providing education and support for people living with sight loss.
Foundation Fighting Blindness is an international organisation driving scientific research, clinical trials, and community programmes to deliver treatments and cures for inherited retinal diseases.
Pro Retina is a German foundation that funds innovative research into retinal degenerative diseases to prevent vision loss and blindness.
Retina UK provides free information, helpline support, peer networks, and wellbeing resources for people affected by inherited sight loss across the UK.
Save Sight Now is a parent‑led, science‑driven nonprofit accelerating the development of treatments for Usher syndrome type 1B to prevent childhood blindness.
Save Sight Now Europe is a European foundation focused on advancing research and building collaboration to prevent vision loss in children with Usher syndrome type 1B.
Stargardt's Connected is a UK community initiative providing information, peer support, and shared experiences for people and families affected by Stargardt disease.
Stichting Ushersyndroom is a Dutch foundation dedicated to funding research, sharing knowledge, and raising awareness to stop the progression of deafblindness caused by Usher syndrome.
The Blind Life is a community-led digital platform that shares practical guidance, assistive technology reviews, and personal insights to help people live confidently with vision loss.
The Carroll Center for the Blind is a long‑established nonprofit providing comprehensive rehabilitation, skills training, and education to help people of all ages live independently with vision loss.
Usher Kids UK is a UK charity supporting children and young people with Usher syndrome and their families through information, connection, and tailored support services.
Usher Syndrome Coalition is a global nonprofit connecting individuals, families, and researchers to raise awareness, support the Usher community, and accelerate research into treatments and cures.
Usher Syndrome Ireland supports individuals and families affected by Usher syndrome in Ireland through awareness, advocacy, and community connection.
Usher Syndrome Society is a US‑based nonprofit that raises awareness and funds research for all types of Usher syndrome, using storytelling and advocacy to drive progress toward a cure.
