The Information centre is a resource that is created by the users of Parentsown.co.uk.
If you have information (white papers, useful links, studies, advice etc) that you think other parents could benefit from add a page (using the link below) to create a new page in the Learning Disabilities Information centre book.
All links will automatically turn in to a web link, and you can attach files (pdf's, Word documents etc) if you wish.
The more pages we add the more information there will be for parents to search on.
If your child has been diagnoses with Joubert’s syndrome (a brain disorder that can cause physical, mental and, sometimes, visual impairments) then you may like to read the ICH Institute of Child Health information leaflet.
It covers causes, how it's diagnosed, symptoms and treatments.
To read the information leaflet, follow this link:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/joubets_syndro...
If your child has been diagnosed with 22q11 deletion syndrome and you are concerned about their education and learning difficulties then you may llike to read the information leaflet produced by ICH Institute for Child Health. It covers all aspects of learning difficulties including memory, attention, language, intelligence, social aspects.
They also give information about other support groups such as the Max Appeal (0800 389 1049) www.maxappeal.og.uk and a few websites in the US (www.vcfsef.org or www.22q.org)
To read the full information leaflet follow this link:
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/22q11_deletion...
http://www.learningdisabilities.org.uk/
http://learningdisability.co.uk/
BREAK
An organisation providing a range of services for children with special needs – including holidays, breaks and respite care, day care and long term care.
www.break-charity.org
British Institute of Learning Disabilities
www.bild.org.uk
01562 723010
RAD Sign Language Bureau
www.royaldeaf.org.uk
0870 7743525
MENCAP (Royal mencap Society)
www.mencap.org.uk
020 74540454
Respond
Providing counselling and a helpline for children with learning disabilities who have experienced abuse, trauma, loss or bereavement.
www.respond.org.uk
020 73830700
If you are looking for information about West’s syndrome (a brain disorder characterised by infantile spasms, a specific EEG pattern and sometimes learning disability) then you may like to read the information sheet produced by ICH Institute of Child Health.
The information leaflet covers possible causes, diagnosis, disease progression and treatments.
To read the leaflet follow this link -
http://www.ich.ucl.ac.uk/gosh_families/information_sheets/wests_syndrome...
There is a support group for West's syndrome and the details are below:
West Syndrome Support Group
c/o Contact a Family
209 – 211 City Road
London EC1V 1JN
Tel: 01252 512707
Email: info@cafamily.org.uk