Definition: Norrie disease is a rare X-linked genetic condition which causes boys to be born blind or with severe sight impairment. Secondary symptoms can include progressive hearing loss, cognitive impairment, autism and delayed development.
Category: Eye Condition
Credit: The Norrie Disease Foundation
Services specifically catering for people with Norrie Disease
Our free Information & Advice
Line offers support and guidance to deafblind
people, their carer
s, family and friends, as well as professionals working with people who have a loss of both hearing and sight. It also provides a service to Deafblind UK's members, who each receive a phonecall three times a year for a general chat and to remind them of the support available through the service. The Information & Advice Line can also connect you to the relevant team or staff member at Deafblind UK.
Volunteer befrienders will regularly visit people with combined sight & hearing loss, helping them to do more of the things they enjoy. This could include a visit to the local café, leisure activities such as rambling, help with information technologies, assistance with simple DIY tasks or a cup of tea and chat - whatever the individual wants. The volunteers do not provide a personal care service so will not be able to help with activities such as lifting people or giving medication.
Cymru's peer support & social groups provide those with both sight and hearing impairments plus their carer
s an opportunity to meet people and make friends. At regular meetings, all members are encouraged to get involved in the decision making process to determine what activities the group should do, often including social outings
and arranging meetings to enjoy guest speakers on subjects of interest.
Specialist one-to-one support for deafblind
people through both communicator guides and intervenors, and outreach support to children
, families and deafblind adults in their own homes
The website contains information for families affected by this condition.