National support contacts
National Support Groups
There are a wide number of groups available to support families with children with specific conditions and rare syndromes and their websites are listed below although we cannot vouch for the quality of the support they can provide.
Angelman syndrome :- www.angelmanuk.org
Attention deficit hyperactivity disorder :- www.adhdandyou.co.uk
Autistic spectrum disorder :- www.autism.org.uk
Cornelia de Lange syndrome :- www.criduchat.co.uk
Down's syndrome :- www.downs-syndrome.org.uk
Dudley Local Offer :- https://www.dudley.gov.uk/residents/dudleys-local-offer
Foetal alcohol syndrome :- www.nofas-uk.org
Fragile X syndrome :- www.fragilex.org.uk
Hemiplegia :- www.hemihelp.org.uk
Joubert syndrome :- www.jsrdf.org
Lowe syndrome :- www.lowetrust.com
Prader-Willi syndrome :- www.pwsa.co.uk
Rett syndrome :- www.rettuk.org
Rubinstein Taybi syndrome :- www.rtsuk.org
Smith-Lemli-Opitz syndrome :- www.smithlemliopitz.org
Smith-Magenis syndrome :- www.smith-magenis.co.uk
Sotos syndrome :- www.sotossyndrome.org
Spina Bifida and Hydrocephalus :- www.shinecharity.org.uk
Tourette syndrome :- www.tourettes-action.org.uk
West syndrome :- www.wssg.org.uk
Williams syndrome :- www.williams-syndrome.org.uk
Wolf-Hirschhorn syndrome :- www.whs4pminus.co.uk
Worster-Drought syndrome :- www.wdssg.org.uk
Other useful sites
National health :- www.nhs.uk
National institute of neurological disroders and stroke (NINDS) :- www.ninds.nih.gov
Speech and language impairment :- www.ican.org.uk
Scope - www.scope.org.uk
Contact a family - for families with disabled children:- www.cafamily.org.uk
Mencap - www.mencap.org.uk
Support for Siblings
There are many sources of support for siblings of children with learning disabilities which can be access through the following websites:
Dudley Sendiass
PLEASE BE AWARE THAT SENDIASS CONTACT DETAILS HAVE CHANGED. PARENTS AND PROFESSIONALS CAN REFER BY TELEPHONE, EMAIL OR MY DUDLEY. THE 01384 NUMBER IS NO LONGER IN USE.
MOBILE NUMBERS : 07900161363 / 07929777744
EMAIL: DUDLEY.SENDIASS@DUDLEY.GOV.UK
Dudley SENDIASS provide legally based advice, information and support on all matters relating to Special Educational Needs (SEN) and disabilities, including health and social care issues. Their service is free, impartial and confidential.
The service is available to parents and carers of a child or young person with SEN or a disability, up to the age of 25 with or without an EHCP.
All information about workshops and events can be found here
The workshops and events are for parents and young people to attend via MS Teams.
Places for workshops and events can be booked by emailing the service dudley.sendiass@dudley.gov.uk
Parents, or young people aged 16 and above, are able to self-refer to the service.
The service leaflets have recently been updated and are available via this link.
