There is a wide range of groups external to Sense who offer information and support for people who are deafblind and their families.

Below are some of these groups. Please note this list is not exhaustive.

CHARGE Family Support Group

The CHARGE Family Support Group is the UK’s registered charity for people with CHARGE syndrome and their families.

The group’s aim is to create a positive, supportive network of individuals, parents, families and professionals to share ideas, experiences and information.

Run by parents and grandparents of individuals with CHARGE and professionals with a particular interest in the condition, the group work on an entirely voluntary basis and membership is free. New members are always welcome.

The group publishes a regular newsletter and can put families in touch with each other, for example, to help tackle a particular issue or to find other families living locally.

Contact: Simon Howard, 59 Elmer Road, London, SE6 2HA
Tel: 020 8265 3604
Email: si_howard@hotmail.com

UsherLife

UsherLife is an internet resource for people who have Usher syndrome where they can connect together both virtually and socially. 

It is run independently by dedicated volunteers who have Usher themselves. The UsherLife website is solely maintained by the founder Nick Sturley.

What can UsherLife offer people with Usher syndrome? It can:

• Bring people together to share their experiences, support one another and share information and knowledge via Facebook, Twitter and Yahoo egroup which engage with people from all over the world
• Provide via its web site a resource base for essential information, with several useful links to help enhance the lives of Usher people
• Help you find out where Ushers meet up socially and to get involved in campaigning and activities
• Enable you to read and share Usher life stories from Usher people on their experiences, achievements, humour, and media articles
• You can subscribe to UsherLife’s e-newsletter via the website

US Families

A Facebook page for people with Usher syndrome and their families.

Helen Keller National Center Rubella list

The Helen Keller National Center in New York, USA provides vocational rehabilitation to adults who are deafblind, including those who are deafblind as a result of congenital rubella syndrome (CRS).

They are one of a handful of agencies worldwide that collect and disseminate information about this low-incidence population. The centre manages a listserv for individuals with CRS, their families and professionals. A listserv is a free internet-based email list where participants can post comments / questions / concerns about a common topic.

Contact: nancyodonnell@hknc.org

Contact a Family

Contact a Family is a UK-wide charity providing advice, information and support to the parents of all disabled children. They hold lists of local and national support groups.

Deafblind UK

Deafblind UK run a number of clubs and support groups for people with acquired deafblindness around the country.

Contact: 0800 132 320

Sibs

Sibs is a charity that provides advice and training to those setting up groups for brothers and sisters of disabled children and young people.

The following sibling projects and groups are run by a range of statutory and voluntary sector organisations across the UK.

For more information about any of these please make direct contact with the group or project.

Area: Barnsley
Run by: Barnsley Young Carers Service and Barnsley Sibling Support Service
Tel: 01226 207133

Area: Bedfordshire - Bedford
Run by: Carers in Bedfordshire
Tel: 01234 214914
Email: janice.shankland@carersinbeds.org.uk

Area: Cornwall - various locations
Run by: Brothers and sisters of disabled children projects (various projects)

Area: Hull
Run by: Barnardos Sibling Support Service
Tel: 01430 810149
Email: siblings@barnardos.org.uk

Area: Knowsley
Run by: PSS Knowsley Siblings Project
Tel: 0151 702 5502
Email: allison.truscott@pss.org.uk

Area: Liverpool
Run by: PSS Liverpool siblings project
Tel: 0151 702 5502

Area: London - Southwark
Run by: Kids
Tel: 0207 701 2826
Email: Natalie.woods@kids.org.uk

Area: London - Camden
Run by: Kids
Tel: 0207 520 0405
Email: elizabeth.olokun@kids.org.uk

Area: London - Ealing
Run by: Kids
Tel: 0208 843 2941
Email: clarks@ealing.gov.uk  or sarah.clark@kids.org.uk

Area: Northamptonshire - various locations
Run by: Families Information Service
Tel: 01604 237935
Email: fis@northamptonshire.gov.uk

Area: Sheffield
Run by: Sheffield Sibling Support Group Service
Tel: 0114 273 4017
Email: philip.hazelhurst@sheffield.gov.uk