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Useful links

Attention Deficit Disorder

Angelman Syndrome

  • Angelman Syndrome Support Education and Research Trust – information, helpline, newsletter: http://angelmanuk.org/

Autism and Asperger Syndrome

Brain injuries and conditions

  • Advance: The Institute for The Scotson Technique – unique restorative science for children and young people with brain injuries: www.scotsontechnique.com/
  • BIBIC (British Institute for Brain Injured Children)- offers families practical help www.bibic.org.uk/
  • Brainwave – home-based programme for children with brain injuries/genetic conditions: www.brainwave.org.uk/
  • Cerebra – support and information for families of children with brain-related conditions: www.cerebra.org.uk/
  • Child Brain Injury Trust – provides information and support for the effects of ‘traumatic’ injury on a child’s developing brain: www.childbraininjurytrust.org.uk/
  • Child Growth Foundation – information about conditions causing growth problems: www.childgrowthfoundation.org/
  • Climb – information for families of children living with inherited metabolic conditions: www.climb.org.uk/
  • Snowdropprovides neural developmental therapy for conditions including Cerebral Palsy, Autism, genetic conditions, developmental delay and brain injury: www.snowdrop.cc/

Cerebral palsy and Hemiplegia

  • Cerebral Palsy Guidance – covers a wide range of topics, such as symptoms, causes, treatment and transitioning to adulthood: www.cerebralpalsyguidance.com
  • HemiHelp – support for children and young people with hemiplegia (hemiparesis): www.hemihelp.org.uk/
  • Scope – helpline and factsheets for parents: www.scope.org.uk

Chromosome disorders

  • SOFT – support for families affected by Patau’s syndrome, Edwards syndrome, partial Trisomy, mosaicism and related disorders: www.soft.org.uk/
  • Unique – information, networking and support for anyone affected by a rare chromosome disorder, their families and the professionals who work with them: www.rarechromo.org/html/home.asp
  • Genetic Alliance – alliance of charities supporting children and families affected by genetic disorders: www.geneticalliance.org.uk

Cockayne Syndrome

Cystic fibrosis

Down’s Syndrome

Dyslexia and dyspraxia

  • Dyslexia-SpLD Trust (The) – a collaboration of voluntary and community organisations funded by the Department for Education to help children with dyslexia/SpLD succeed in school: www.thedyslexia-spldtrust.org.uk/
  • Dyspraxia Foundation – books, suggestions, teen newsletter, and adult support group: www.dyspraxiafoundation.org.uk/

Epilepsy

Fragile X

  • Fragile X Society – support, information and helplines for families, plus promotion of research: http://fragilex.org.uk/

Hearing impairments

  • Elizabeth Foundation – helping deaf preschool children learn to listen and talk: www.elizabeth-foundation.org/
  • National Deaf Children’s Society – help and support: www.ndcs.org.uk/
  • Heartline – support and help for children with congenital heart conditions and their families

Learning difficulties/disabilities

  • Mencap – support and information for families and carers of children with a learning disability: www.mencap.org.uk/
  • SCOPE Online community full of tips and bright ideas from parents, carers, teachers and therapists
  • Easyhealth – accessible health information for parents, supporters and carers of people with learning disabilities, and people with milder learning disabilities themselves.: www.easyhealth.org.uk/

Limb conditions

  • REACH – support and advice for children with hand or arm deficiencies, and their parents: www.reach.org.uk/
  • Steps – support for parents of children affected by lower limb conditions: www.steps-charity.org.uk/

Siblings support

Speech and language impairments

  • Afasic – supports children with speech, language and communication impairments: www.afasic.org.uk/
  • I CAN – supports speech, language and communication development in children: www.ican.org.uk/

Spina Bifida and Hydrocephalus

Tourette’s syndrome

Turner syndrome

Undiagnosed Conditions

  • SWAN UK – offers support and information to families of children with undiagnosed genetic conditions: http://undiagnosed.org.uk/

Visual impairments

  • Calibre Audio Library – provides audio books to those with sight impairment and dyslexia: www.calibre.org.uk/
  • Living Paintings – a free library of Touch to See books bringing to life the visual world for blind or partially sighted people: www.livingpaintings.org/
  • Load2Learn – accessible textbooks and images to support dyslexic, partially sighted or blind learners: http://load2learn.org.uk/
  • LOOK UK – supporting parents and carers of children with a visual impairment: www.look-uk.org/
  • MISE (Mobility and Independence Specialists in Education) – holds a register of specialist practitioners who will deliver habilitation training to visually impaired children and young people: www.mise.org.uk/
  • National Blind Children’s Society – help and info for children and young people with visual impairments, and their families: www.nbcs.org.uk
  • Talking Books for Children – a free library of audio books for children, from the RNIB: www.rnib.org.uk/talking-books-service
  • VICTA Visually Impaired Children Taking Action – support for blind and partially sighted children, young people and their families: www.victa.org.uk/

Other national SEND support organisations