about us
Usher Kids UK is a network established to support, inform, connect and advocate for children diagnosed with Usher syndrome and their families. Usher syndrome is a rare genetic condition which affects hearing, vision, and in some case, balance.
Because Usher syndrome is so rare, most people have never heard of the condition until they receive the diagnosis. Children are now often diagnosed at a very young age, and yet little support exists to meet the unique challenges they face. It often is hard to find other families and professionals who have experience of the condition, and yet getting support from others can really help make the path ahead easier.
Usher Kids UK has been created by the parents of a young child, diagnosed with Usher syndrome at the age of 18 months old. It has been formed (following the footsteps of the successful UsherKids Australia group) in the hope of giving parents constructive support and making the experience easier for those families that may follow along this path.
Because Usher syndrome is so rare, most people have never heard of the condition until they receive the diagnosis. Children are now often diagnosed at a very young age, and yet little support exists to meet the unique challenges they face. It often is hard to find other families and professionals who have experience of the condition, and yet getting support from others can really help make the path ahead easier.
Usher Kids UK has been created by the parents of a young child, diagnosed with Usher syndrome at the age of 18 months old. It has been formed (following the footsteps of the successful UsherKids Australia group) in the hope of giving parents constructive support and making the experience easier for those families that may follow along this path.
acknowledgements
This website has been created with financial assistance from Sense (a UK charity supporting deafblind people). Invaluable practical support has also been received from the Eye Clinic Liaison Officer based at the Royal Eye Hospital in Manchester. Sincere thanks to both parties.
The information on this website has been developed with the guidance and expertise of a dedicated group of medical, educational and other professionals who have become our "Usher Champions". Individuals and families that live with Usher syndrome have also been involved in the creation of resources. Many thanks to them all for their ongoing support.
The information on this website has been developed with the guidance and expertise of a dedicated group of medical, educational and other professionals who have become our "Usher Champions". Individuals and families that live with Usher syndrome have also been involved in the creation of resources. Many thanks to them all for their ongoing support.
Usher Kids UK Privacy Notice (Dec 2022) (Click to open document)