Welcome to Joubert Syndrome in the UK We also welcome Related Cerebellar Disorders

Useful Links

Here is a list of the many websites that families have found useful ranging from:

Charities, Support, Equipment, Therapies and Education.

Site title	Description
1voice	Network and support for children and families using communication aids.

Aidis Trust	Has been developed to help Disabled People make best use of information and communication technology by giving information, help and support on all aspects of disability computing. Also provides free software to download.

AISJAC	Italian Association of Joubert Syndrome

ASINJOU	Spanish Association of Joubert Syndrome

Bobath Therapy	The main aim of Bobath is to encourage and increase the child's ability to move and function in as normal a way as possible.

BT Education	BT’s Education programme (free speaking and listening resources, and more, for schools)

Carers UK	Carers UK is the voice of carers. They provide free factsheets and booklets for carers.

Conductive Education	Conductive Education teaches children and adults with physical disabilities such as cerebral palsy, dyspraxia, multiple sclerosis, Parkinson’s, stroke and head injury how to overcome their movement problems to lead more independent, dignified and fulfilled lives.

Contact a Family	Contact a Family provides advice, information and support to the parents of all disabled children. They also enable parents to get in contact with other families, both on a local and national basis.

Epilepsy Action	Epilepsy action is the working name of the British Epilepsy Association. It provides a wide range of services and information to support anybody with an interest in epilepsy.

Fledglings	Fledglings helps parents/carers of a child with special needs to find simple, affordable solutions to practical problems. Offering a free product search service as well as keeping products in stock.

Handmade Hammocks	Lots of different hammock styles, could be a useful aid for swinging when a child has sensory issues.

Hatchbacks Footwear	Special shoes designed for use with AFO's. Can be shipped from the US and also available in the UK , check out the store locator on their website.

Inchworm Shoes	Built right into INCHworm shoes is the iFit technology. The iFit technology allows you to GROW the size of the shoe with a simple push of the button, to provide your children with better fitting shoes that last up to three sizes longer. Inchworm shoes grow in half size increments. Just push the button on the side, and pull the toe of the shoe to adjust into the next size.

Inclusive Technology	The very best educational software, switches and computer access devices, simple communication aids and assistive technology for learners with special needs.

Jenx - Furniture for Special Needs Children	Jenx Limited designs and manufactures innovative, therapeutic products for children with special needs.

Joubert Syndrome Foundation	The Joubert Syndrome Foundation is a worldwide organisation and provides updated medical information, research and a bi-annual conference.

Kids Days Out	Days out for children, with details of wheelchair access for disabled, throughout Britain

Kidzaware	The Kidzaware programme is aimed at teaching young children and adults about the different types of disability using life size puppets and are also able to provide useful disability manuals.

Lecky	Positioning equipment for children with special needs

Makaton	Makaton is a simple sign & symbol communication system, a charity organisation with lots of ideas, advice & provision of a regular e-mail newsletter.

National Society for Epilepsy (NSE)	National Society for Epilepsy (NSE) Advice and information on all aspects of epilepsy.

Newlife Foundation	Purchase disabled childrens equipment from a UK child health & research charity. They also provide publications, a nurses manned helpline and equipment grants.

nystagmus.co.uk	This website is designed for parents, friends, family and teachers who are interested in finding out about nystagmus, including personal experiences of a teenager/child, facts and the scientific details.

PRI Liberator	PRI Liberator Ltd is a world-leading supplier of products, training and support for communication, inclusion and independence.

R.N.I.B.	There are around two million people in the UK with sight problems and RNIB (Royal National Institute of Blind People) is the leading charity offering practical support and information to anyone with a sight problem. Our pioneering work helps - not just with braille, Talking Books and computer training but with imaginative and practical solutions to everyday challenges.

Racketys	Special needs clothing for indoors and outdoors including swimwear.

RDA	Riding for the disabled, find a local group to benefit from horse therapy

Rompa	Sensory toys, furniture and more

Special Abilities	Provide information advice and support around disability issues to parents/carers of a disabled child and adults with a disability locally in Wakefield and on a national basis .

Special Kids in the UK	Special Kids in the UK have a vast amount of resources and bring families together for friendship and support.

Special Needs Kids	Special Needs Kids is an information and shopping directory for parents and carers.

STEPS	Charity that provides a FREE Developmental Toy and Switch Postal Lending Library service to individual children and hospices.

Weight 2 go blankets	A UK based company making weighted blankets and other weighted products.

Weighted Blankets	Weighted bankets including advice on weighted therapy for sleep and calm regarding sensory issues.