Links to support and information
A
Anxiety Disorder in Children
Royal College of Psychiatrists – describes the different types of anxieties that children might feel and some of the reasons behind these.
https://www.rcpsych.ac.uk/mental-health/parents-and-young-people/information-for-parents-andcarers/worries-and-anxieties-for-parents
Young Minds – offering information, advice and support for young people and their families.
https://www.youngminds.org.uk
ARFID
ARFID Awareness UK – information, support and resources for families with children who have ARFID.
https://www.arfidawarenessuk.org
Asthma
Asthma and Lungs UK – vast range of information and support on asthma including asthma and your child.
https://www.asthmaandlung.org.uk/conditions/asthma/child
Beat Asthma – Charity supporting children, young people and families living with asthma
https://www.beatasthma.co.uk
Attention Deficit Hyperactive Disorder (ADHD)
ADHD Foundation – The ADHD Foundation Neurodiversity Charity supports parents and carers so they can understand and meet the needs of their child. With a range of webinars, courses, resources, and our screening service, we help families to know which interventions and adaptations are right for them.
https://www.adhdfoundation.org.uk
Auditory Processing Disorder (APD)
APD Support UK – offers information, advice and resources on living with APD.
https://apdsupportuk.wixsite.com/apd-support-uk
Autism
National Autistic Society (NAS) – providing support, information and practical advice for autistic adults and children in the UK, as well as their family members and carers.
https://www.autism.org.uk
Ambitious About Autism – Providing information support and resources for families of children and young people.
https://www.ambitiousaboutautism.org.uk
Autism Central – aims to make it easier for parents and carers to learn more about autism and services available to you.
https://www.autismcentral.org.uk
B
Bipolar
Bipolar UK – dedicated solely to people affected by bipolar
https://www.bipolaruk.org
Blindness and Vision Loss
Royal National Institute of Blindness – The RNIB’s website is specially designed for people with sight loss and provides a wide range of useful information and resources, including an online community.
https://www.rnib.org.uk
Royal Society for Blind Children – supporting blind and partially sighted children, young people and their families.
https://www.rsbc.org.uk
SeeAbility – supporting children and young people who have a learning disability or autism who may have a sight loss.
https://www.seeability.org
Thomas Pocklington Trust – advice, support and information for blind or partially sighted people.
https://www.pocklington.org.uk
Brain Injuries and conditions
Celebra – offer support and information for families of children with brain-related conditions:
https://www.cerebra.org.uk
Child Brain Injury Trust – provides information and support for the effects of ‘traumatic’ injury on a child’s developing brain: https://www.childbraininjurytrust.org.uk/
C
Cerebral Palsy and Hemiplegia
Action Cerebral Palsy – is a consortium of specialist providers for children and young people with cerebral palsy and related challenges.
https://actioncp.org
Cerebal Palsy – provides support by offering impartial information on a broad range of subjects that people affected by CP should find useful.
https://www.cerebralpalsy.org.uk
HemiHelp – Contact for families of disabled children Continuing the work of the charity HemiHelp, provide support to children and young people living with hemiplegia.
https://www.hemihelp.org.uk/
Scope – is the main UK charity for people with cerebral palsy and their families.
https://www.scope.org.uk/advice-and-support/cerebral-palsy-introduction
Chromosome disorders
SOFT – UK Is here to support you. Our mission is to provide support and information to all those who are affected by Patau’s syndrome (Trisomy 13) or Edwards’ syndrome (Trisomy 18) and their related disorders. To support families, healthcare professionals and carers.
https://www.soft.org.uk
Unique – can help you find out about your child’s rare chromosome disorder.
https://rarechromo.org/html/home.asp
Genetic Alliance – alliance of charities supporting children and families affected by genetic disorders:
https://www.geneticalliance.org.uk/
Colour vision deficiency (colour Blindness)
Colour Blindness Awareness – providing a range of information and resources for families.
https://www.colourblindawareness.org
Cystic Fibrosis
Cystic Fibrosis Trust – information, advice and support
https://www.cysticfibrosis.org.uk
D
Developmental Co-ordination Disorder (DCD)
Previously known as Dyspraxia
Movement Matters – The UK umbrella organisation representing the major national groups concerned with children and adults with dyspraxia. The website holds documents and videos aimed at parents, teachers and employers of people with DCD.
www.movementmattersuk.org
Diabetes
Children with Diabetes UK – supporting families with newly diagnosed children or any families who wish to discuss raising a child with diabetes.
https://www.childrenwithdiabetesuk.org
Breakthough T1D – Information and support for people and parent carers of children with type 1 diabetes.
https://breakthrought1d.org.uk/knowledge-support/guide-for-parents/
DigiBete – A place to help children, young people and families to help manage Type 1 Diabetes. Digibete is a video platform and app. https://www.digibete.org
DiGeorge syndrome (22q11 deletion)
Max Appeal – information and recourses for families of children and young people with 22q11.
https://www.maxappeal.org.uk
Down’s Syndrome
Down’s Syndrome Association – a national organisation, committed to improving quality of life for people who have Down’s syndrome, promoting their right to be included on a full and equal basis with others.
https://www.downs-syndrome.org.uk/
Down’s Syndrome UK – supporting families and professionals to improve the lives of those with Down’s Syndrome and their families.
https://downsyndromeuk.co.uk/
Dyscalculia
Dyscalculia Network – offering information and advice on Dyscalculia including how to get diagnosed and what can be done to help at school and at home.
https://www.digibete.org
The Dyscalculia Information Centre – provides information, resource’s and more.
https://www.dyscalculia.me.uk
Dyslexia
British Dyslexia Association – Help, support and advice for families and professionals.
https://www.bdadyslexia.org.uk
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:
https://www.thedyslexia-spldtrust.org.uk/
E
Epilepsy
Young Epilepsy – offering information, advice and support for children, young people and their families.
https://www.youngepilepsy.org.uk
The Daisy Garland – working exclusively for children with drug-resistant epilepsy and their families.
https://www.thedaisygarland.org.uk
Epilepsy Action – a wide range of information, advice and support for families of children with epilepsy.
https://www.epilepsy.org.uk
F
Fetal alcohol spectrum disorder
National organisation for FASD – offering information, support and resources for families.
https://nationalfasd.org.uk
Fragile X
National Fragile X Foundation – information, advice and resources on Fragile X.
Click here
Fragile X Society – information and support for families impacted by Fragile X.
https://www.fragilex.org.uk
H
Hearing impairments
British Deaf Association (BDA) – The largest national organisation run by deaf people for deaf people. The BDA represents the views of the deaf community and promotes British Sign Language. It also has a Youth, Children and Families section
https://bda.org.uk
National Deaf Children’s Society – providing information, advice and support for children, young people, their families and professionals.
https://www.ndcs.org.uk
Usher Kids UK – Usher Kids UK is a national charity, which exists to empower children, young people (0-25yrs) and their families living with Usher syndrome. They provide information, support and opportunities to connect, virtually and in-person. For more information
https://www.usherkidsuk.org
J
Joint Hypermobility Syndrome
Hypermobility Syndrome Association – supporting children and families with hypermobility
https://www.hypermobility.org
L
Learning Disability
Learning Disability Network London – supporting children and adults with a Learning Disability and their families across London.
https://www.ldnlondon.org
Mencap – information, advice and resources for those with a learning disability
https://www.mencap.org.uk/learning-disability-explained/communicating-people-learningdisability
M
Muscular dystrophy
Muscular Dystrophy UK – offers a wide range of information, advice and resources for families.
https://www.musculardystrophyuk.org
N
Noonan syndrome
Noonan Syndrome Association – support families and individuals with Noonan Syndrome.
https://www.noonansyndrome.org.uk
P
Physical Disabilities
Newlife – charity offering information and advice for children with a physical disability and their families.
https://newlifecharity.co.uk
Prada – Willi syndrome
PWSA UK – information, advice and resources for families of children with Prada-Willi syndrome.
https://www.pwsa.co.uk
R
Restricted growth (dwarfism)
Little People UK – offers information, resources and advice for families with restricted growth (dwarfism).
https://littlepeopleuk.org
Rett Syndrome
Rett UK – information, advice and support for families of children with Rett Syndrome.
https://www.rettuk.org
S
Scoliosis
Scoliosis support and research – information, advice and support for those with Scoliosis.
https://ssr.org.uk
Selective mutism (SM)
SMIRA (Selective Mutism Information & Research Association) – offers information, advice and resources for families with children with SM.
https://www.selectivemutism.org.uk
Sickle Cell Disorder
Sickle Cell Society – Information, advice and support for families.
https://www.sicklecellsociety.org
Sleep Apnoea
Hope2Sleep – information and advice on sleep apnoea in children.
https://www.hope2sleep.co.uk/sleep-apnoea-in-children.html
Social anxiety (social phobia)
Anxiety UK – Vast information, advice, and support for those wanting to know more and seeking support for anxiety.
https://www.anxietyuk.org.uk
TOP UK (The OCD and phobia charity) – offering information, support and more for those over 16.
https://www.topuk.org
Young Minds – organisation to help and support young people with mental health including anxiety.
https://www.youngminds.org.uk
Spina Bifida
Shine – offering whole life support, information, advice and resources for people with spinal bifida.
https://www.shinecharity.org.uk/find-support/find-support
T
Tay-Sachs Disease
National Tay-Sachs & Allied Diseases Association – information, support and research for families.
https://ntsad.org
Tourette’s Syndrome
Tourette’s Action – offering information, support and advice
https://www.tourettes-action.org.uk
Turner Syndrome
Turner Syndrome Support Society – support for women and girls with Turner Syndrome.
https://www.tss.org.uk