Useful Links
Welcome to our Useful Links page! This page provides a list of organisations, resources, and support networks that are available to the deafblind community, people with sensory loss, and their families.
Explore the contents section below to find the relevant help and navigate to the guidance you need.
Deafblind Organisations and Information
Sense Scotland - a Scottish charity and social care provider supporting people with communication support needs and their families.
https://www.sensescotland.org.uk
Deafblind UK - helps people who are deafblind to live with their condition and to build their confidence and independence.
Sense UK and Sense Scotland - supports deafblind and multi-sensory impaired people to communicate, experience the world and fulfil their potential.
Sense International - is the only international NGO dedicated to supporting people with deafblindness and their families around the world.
https://www.senseinternational.org.uk
Scottish Sensory Centre - is for everyone who is involved in the education of deaf children, deafblind children and visually impaired children and young people, the young people themselves and their families. They provide learning opportunities to teachers and professionals; they engage in research into the issues that affect children with sensory loss and the professionals who work with them.
https://www.ssc.education.ed.ac.uk
Deafblind International - is the point of connection in deafblindness worldwide. They connect to maximise positive impact for and with all those concerned and involved.
https://www.deafblindinternational.org
European Deafblind Network (edbn): their aim is to provide equal opportunities for people with deafblindness, as well as their families.
Royal Kentalis: is an international NGO, that works on enhancing inclusive deaf education in the Global South.
Nordic Cognition Network in relation to Deafblindness: The main purpose of the network is to increase professional competence in order to understand cognitive development, identify cognition, and recognise the relationship to learning and functioning in everyday life in people with congenital deafblindness.
https://nordicwelfare.org/en/natverk/cognition/
Alliance Sensory Hub - works to ensure that people who have or develop sensory loss are able to understand what this means for them within their lives.
https://www.alliance-scotland.org.uk/policy-and-research/scottish-sensory-hub
T: 0141 404 0231
Email: info@alliance-scotland.org.uk
Nordic Welfare Centre - The deafblind field at Nordic Welfare Centre, supports equal opportunities and participation in society for people with combined vision and hearing impairment and deafblindness.
https://nordicwelfare.org/en/disability-issues/the-deafblind-field/
Forth Valley Sensory Centre - offers support, services, and resources for individuals with sensory impairments, fostering independence and enhancing quality of life through tailored programs and community engagement.
https://www.forthvalleysensorycentre.org
T: 01324 590888
Email: sensory@forthvalleysensorycentre.org
North East Sensory Service - provides support, resources, and services for individuals with sensory impairments, promoting independence and enhancing quality of life across the North East of Scotland.
https://www.nesensoryservices.org
Email: info@nesensoryservices.org
YouTube Videos
Revealing Hidden Potentials:
https://www.youtube.com/watch?v=nfR0HaFKxac&t=17s
Nordic Approaches to Deafblindness (English Version): https://www.youtube.com/watch?v=LiMOJa4WmsI
World Federation of the Deafblind – What is Deafblindness?: https://www.youtube.com/watch?v=4Wt2YaN87Cg
Dr Paul Hart – The Fantastic World of Touch: https://www.youtube.com/watch?v=aW1jtexOeUo&t=10s
Barbara Miles - Reflections on Deafblindness – Hands and Touch:
https://www.youtube.com/watch?v=jJ3yHmB6bLk
Usher Syndrome Information and Support
Usher Kids UK - was founded by a parent determined to ensure that families like theirs, with a child diagnosed with Usher syndrome, could access tailored information, support and the chance to connect with other families and experts
Cure Usher - A charity working towards funding research and finding a cure for Usher syndrome, while offering information and ways to support fundraising.
https://cureushersyndrome.com/
Jo Milne - linked to Cure Usher
https://www.instagram.com/jomilne10/
Mark Jordan and Laura Norton - linked to Cure Usher
https://www.instagram.com/markjordondad/
https://www.instagram.com/laura_norts/
Deafblind International Usher Network - A professional network aimed at sharing knowledge about Usher syndrome research and best practices across countries. The group offers a platform for collaboration and innovation in working with Usher syndrome. To become a member please register here: Usher Network – Deafblind International
Usher Syndrome Coalition - A global coalition providing resources, a registry, and connections to research and support for Usher syndrome.
https://www.usher-syndrome.org
Molly Watt Trust - An advocate living with Usher syndrome, Molly uses her platform to raise awareness, promote inclusivity and foster a community for those with Usher Syndrome.
Molly Watt Trust | Raising Awareness of Usher Syndrome (molly-watt-trust.org)
Facebook- https://www.facebook.com/mollywatttalks
Genetic Information regarding Usher Syndrome
A comprehensive catalogue of human genes and genetic disorders, detailing the genetics of Usher syndrome Type 1B.
An academic article focusing on the genetic variations and their clinical manifestations in Usher syndrome- Review of Genotype-Phenotype Correlations in Usher Syndrome - PubMed (nih.gov)
https://pubmed.ncbi.nlm.nih.gov/34039936/
D/deaf and Hearing Loss Organisations and Information
National Deaf Children's Society - the UK leading charity for deaf children.
We’re here for every deaf child who needs us – no matter what their level or type of deafness or how they communicate.
Helpline: 0808 800 8880
Email: ndcs@ndcs.org.uk
British Deaf Association - is the UK's leading membership organisation and registered charity led by Deaf people, for Deaf people.
T: 0141 248 5565
Email: bda@bda.org.uk
RNID - the Royal National Institute for Deaf People is a charitable organization working on behalf of the UK's 9 million people who are deaf or have hearing loss.
T: 0808 808 0123
Email: contact@rnid.org.uk
Scottish Ethnic Minority Deaf - supports and advocates for deaf individuals from ethnic minority backgrounds, promoting inclusion, equality, and access to services.
T: 07706 334429 (sms/Facetime only)
Email: info@semdc.org.uk
Deaf Action - is a deaf-led charity that supports and celebrates deaf people.
T: 0131 556 3128
Email: admin@deafaction.org
Solar Bear - creates inclusive and accessible theatre productions, workshops, and creative projects that integrate deaf and hearing communities, promoting the use of British Sign Language (BSL) in the arts.
Email: info@solarbear.org.uk
Sign Language Interactions - provides professional British Sign Language (BSL) interpreting services, supporting communication between deaf and hearing individuals across various settings.
https://signlanguageinteractions.com
T: 0333 344 7712
Email: admin@signlanguageinteractions.com
Contact Scotland BSL - Scotland’s national BSL video interpreting relay service
https://contactscotland-bsl.org
Email: info@contactscotland-bsl.org
A video series provideing quick and engaging facts about British Sign Language (BSL), including its history, usage, and importance in the Deaf community. It’s an excellent resource for those looking to learn more about BSL in an easily accessible format. BSL Facts on Vimeo
Solar Flares: Deaf Heritage is a resource focused on celebrating and preserving the history and culture of the Deaf community in the UK. It provides information on the achievements and contributions of Deaf individuals to British society over time. Solar Flares - Deaf Heritage - (sfdh.org.uk)
Sign Station is a UK-based resource offering information about sign language and Deaf culture. It provides access to materials, workshops, and educational resources to support learning BSL and understanding Deaf communities. Home - Sign Station
Official menopause guide for BSL users - In partnership with My Menopause Centre and BID Services, Holland & Barrett has created the first official BSL resources on menopause. These resources are designed to provide female BSL users with accessible information on menopause symptoms, treatments, and options. The free resources are available online via the Holland & Barrett Menopause Hub.
Sight Loss Organisations
RNIB - the Royal National Institute of Blind People, is a UK charity that offers information, support and advice to people in the UK with sight loss.
Helpline: 0303 123 9999
Email: rnibscotland@rnib.org.uk.
Visibility Scotland - provides support for people with visual impairment, their family and carers.
https://visibilityscotland.org.uk
T: 0141 332 4632
Email: info@visibilityscotland.org.uk
Sight Scotland Veterans - offers support across Scotland to veterans of the Armed Forces who need support to adapt to sight loss.
https://sightscotland.org.uk/veterans
T: 0800 035 6409
Email: hello@sightscotlandveterans.org.uk.
Retina UK – Local Peer Support Groups
https://retinauk.org.uk/information-and-support/services/local-peer-support-groups/
Research
Anna Nafstad and Marlene Daelman:
Excursions into the Richness of Human Communication: Theory and practice during and before the 10 years of the International Master program on Communication and Congenital deafblindness
https://jdbsc.rug.nl/article/view/29192
Intersubjective Understanding in Interpreted Table Conversations for Deafblind Persons
https://sjdr.se/articles/10.16993/sjdr.786
Towards an Aesthetic Space: A Comparative Study
https://jdbsc.rug.nl/article/view/32573
Jude Nicolas, Annika Johannessen, Trees Van Nunen:
Tactile Working Memory Scale – A Professional Manual
https://nordicwelfare.org/en/publikationer/tactile-working-memory-scale-a-professional-manual/
Deafblindness (Multi-sensory impairment) Clinical information | RCSLT
https://www.rcslt.org/speech-and-language-therapy/clinical-information/deafblindness/#section-10
National Sensory Impairment Partnership UK
The Nordic Cognition Network in Relation to Deafblindness:
Revealing Hidden Potentials – Assessing Cognition in Individuals with Congenital Deafblindness
https://nordicwelfare.org/en/publikationer/hidden-potentials/
Journal of Deafblind Studies on Communication – University of Groningen Press: https://jdbsc.rug.nl
Partner Strategies when Assessing Deafblindness:
https://www.youtube.com/watch?v=6WMLqGekt8c&t=193s
Humour and Playfulness within Social Cognition: https://www.youtube.com/watch?v=zauO3Vi1uIk&t=4288s