Usher syndrome

Definition: Form of deafblindness where people are born deaf or hard of hearing and start to lose their sight (with retinitis pigmentosa) in the school years.

Category: Eye Condition

Credit: Sense


Services specifically catering for people with Usher syndrome

Peer Support & Social Groups - (Deafblind Cymru)Service

Deafblind Cymru's peer support & social groups provide those with both sight and hearing impairments plus their carers 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.
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Deafblind Cymru - Conwy Group - (Deafblind Cymru)Service

Meets on the last Friday of the month from 11 am to 1 pm at the Ambassador Hotel, Llandudno.
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Sight Life Dual Sensory Support Group - (Sight Life)Service

The club meets at Jones Court, Womanby Street, Cardiff on the 3rd Friday of every month fron 10.30am - 12.30pm. Anyone with a sight and hearing impairment are welcome. Volunteers will be on hand to assist if need be.
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Deafblind support - (Sense Cymru)Service

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
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Deafblind UK Information and advice line - (Deafblind UK)Service

Our free Information & Advice Line offers support and guidance to deafblind people, their carers, 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.
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In Touch befriender service - (Deafblind Cymru)Service

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.
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Sense Usher Service - (Sense UK)Service

The Sense Usher Service specialises in the field of Usher syndrome and supports people with Usher, their families and professionals. Support covers advice, assessments, training, mentoring and professional support.
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