Skip to main content

We use cookies on this website. By using this site, you agree that we may store and access cookies on your device.

Useful childhood disability websites

Health professionals and families have chosen these sites as providing helpful information about the most common childhood conditions associated with disability.

Some of these websites are not Irish. They may contain information on services which may not be available in Ireland. You may still find the general information and advice useful.

A

Autistic spectrum disorders, autism

Aspire Ireland (Asperger Syndrome Association of Ireland)

Support and information for people who have Asperger's syndrome and their families.

www.aspireireland.ie

Autism Ireland

A charity that raises awareness and provides information on: education, intervention, support, advocacy, counselling, home-based support, research, information and advice for families.

www.autismireland.ie

Middletown Centre for Autism

The Centre was established by The Department of Education and Skills Ireland and the Department of Education Northern Ireland to support the promotion of excellence in the education of children and young people with Autistic Spectrum Disorders.

www.middletownautism.com

AsIAm

A portal for the public and those with Autistic Spectrum Disorders providing information and a forum for people affected by Autism to share their stories and views.

https://asiam.ie/

Attention deficit disorder (ADD), Attention deficit hyperactivity disorder (ADHD)

HADD-ADHD Ireland 

HADD-ADHD Ireland's mission is to make life better for people affected by attention deficit hyperactivity disorder (ADHD).

www.hadd.ie

The Irish National Council of ADHD Support Groups (INCADDS) 

National organisation that supports people with AD/HD by promoting person-centred treatment and raising awareness. INCADDS makes sure that families are supported so that they can support their children and relatives. Some local groups operate a phone helpline.

www.incadds.ie

Angelman Syndrome

Angelman Syndrome Ireland 

A not for profit charity providing support and information about this rare neuro-genetic disorder of chromosome 15, which results in severe developmental delay.

www.angelman.ie

B

Brain Injury

Acquired Brain Injury Ireland (ABI Ireland)

Acquired Brain Injury Ireland (ABI Ireland) is Irelands leading provider of community based neuro-rehabilitation services for people who have acquired a brain injury in Ireland.

www.abiireland.ie

Headway Ireland

Provides services and supports for people living with Acquired Brain Injury.

www.headway.ie

Blindness and visual impairment

National Council for the Blind Ireland (NCBI)

NCBI (National Council for the Blind Ireland) is the national sight loss agency, which offers support and services to people of all ages who are experiencing difficulties with their eyesight.

C

Cerebral Palsy

Scope

A UK disability equality organisation which has useful information about cerebral palsy amongst other conditions on its website.

http://www.scope.org.uk/

Please note non-Irish websites may have information about services which is not applicable in Ireland.

Chromosomal

Unique

An international group, supporting, informing and networking with anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder and with any interested professionals.

www.rarechromo.org

The Genetic and Rare Disorders Organisation

A national alliance for voluntary groups representing the views and concerns pof people affected by or at risk of developing genetic or other rare disorders.

http://www.grdo.ie/

Cleft palate

The Cleft Lip & Palate Association of Ireland (CLAPAI)

A voluntary group formed to provide support and information for parents of children affected by cleft lip and palate and those directly affected by the condition.

http://www.cleft.ie/

D

Down Syndrome

Down Syndrome Ireland

Offers support and services to people with Down Syndrome and their families throughout Ireland.

http://www.downsyndrome.ie/

Deaf and Hard of Hearing

A national organisation providing services, supports and information for people with hearing loss and promotes the equal rights of Deaf and Hard of Hearing people.

www.deafhear.ie

Share the Journey

An independent organisation established by parents of d/Deaf and hard of hearing children to provide information and support to other parents of d/Deaf and hard of hearing children, regardless of the communication, education and technological decisions they have made or will make for their children.

http://www.sharingthejourney.ie/

Dyspraxia/Developmental Coordination Disorder

Dyspraxia DCD Ireland

Provides information, services and supports for parents of children with dyspraxia and DCD.

http://www.dyspraxia.ie

F

Foetal Alcohol Syndrome

Foetal Alcohol Spectrum Disorders Ireland

Provides information to support families, carers and individuals affected by FASD and raises awareness of the condition.

http://www.fasd.ie/

Fragile X syndrome

The Irish Fragile X Society

Promotes public awareness of Fragile X Syndrome, provides support for families caring for individuals with Fragile X, and gathers current information regarding Fragile X and the treatment of its symptoms.

http://fragilexireland.org/

The Fragile X Society in the UK provides information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X-associated conditions

http://www.fragilex.org.uk/

Please note non-Irish websites may have information about services which is not applicable in Ireland.

Friedreich’s Ataxia

The National Institute of Neurological Disorders and Stroke in the USA has a fact sheet on Friedreich’s Ataxia

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Friedreichs-Ataxia-Fact-Sheet

G

Global Developmental Delay

Contact a Family

A UK organisation that gives advice, support and information on all aspects of caring for a child with a disability. Here is their fact sheet on Global Developmental Delay.

http://www.cafamily.org.uk/medical-information/conditions/g/global-developmental-delay/

Please note non-Irish websites may have information about services which is not applicable in Ireland.

H

Hydrocephalus

Spina Bifida and Hydrocephalus Ireland

Provides essential information, support and advice for everyone living with spina bifida and/or hydrocephalus.

http://www.sbhi.ie/

I

Intellectual Disability (also called learning disability)

Inclusion Ireland

The National Association for People with Intellectual Disability. They provide information and support, promote advocacy particularly self-advocacy and organise conferences and research into intellectual disability.

www.inclusionireland.ie

M

Muscular Dystrophy

Muscular Dystrophy Ireland (MDI)

Supports people who have muscular dystrophy and related neuromuscular conditions and their families.

http://www.mdi.ie/

Information about the different types of Muscular Dystrophy, causes and treatment from the UK’s National Health Service:

http://www.nhs.uk/conditions/muscular-dystrophy/Pages/Introduction.aspx

Non-Irish websites may have information about services which does not apply to Ireland.

Microcephaly

Information about microcephaly from the US Centre for Disease Control and Prevention:

http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html

P

Prader Willi Syndrome

Prader Willi Association Ireland

Prader Willi Association Ireland provides support for persons with PWS, their families, and their carers by providing a range of services such as: promoting awareness of the syndrome; providing information services including seminars and conferences; and by promoting best practice standards of care for persons with PWS.

http://pwsai.ie/

Prader Willi Syndrome Association (USA) has information about the condition on its website:

http://www.pwsausa.org/

Non-Irish websites may have information about services which does not apply to Ireland.

R

Rett Syndrome

Rett Syndrome Association of Ireland

An association of parents and families of people affected with Rett Syndrome and other related disorders who provide support and information to each other and to families who have received a new diagnosis.

http://rettsyndrome.ie/

S

Speech and Language Disorders

Speech Sound Impairment, Developmental Language Disorder, Social Pragmatic Communication Disorder and Language Disorder.

Enable Ireland has a number of useful information sheets about these speech disorders, written by Speech and Language Therapists:

https://www.enableireland.ie/resources/publications

Spina Bifida

Spina Bifida and Hydrocephalus Ireland

Provides essential information, support and advice for everyone living with spina bifida/hydrocephalus.

http://www.sbhi.ie/

Spinal Injury

Spinal Injuries Ireland (SII)

This is the only support and service agency in Ireland for people who have sustained a spinal cord injury and their families and provides a person centred service to assist people to engage fully in society.

http://spinalinjuries.ie/

Spinal Muscular Atrophy

Muscular Dystrophy Ireland (MDI)

Supports people who have muscular dystrophy and related neuromuscular conditions and their families.

http://www.mdi.ie/

Syndromes

Information on many syndromes and disorders can be found on the US National Human Genome Research Institute’s website.

https://www.genome.gov/10001204

T

Turner Syndrome

Turner Contact Group Ireland

Provides information about Turner Syndrome and support resources

http://www.tcgi.ie/

Turner Syndrome Society of the United States advances knowledge and facilitates research into Turner Syndrome.

www.TurnerSyndrome.org/

Please note non-Irish websites may have information about services which is not applicable in Ireland.

V

Visual Impairment

National Council for the Blind Ireland (NCBI)

The national sight loss agency, which offers support and services to people of all ages who are experiencing difficulties with their eyesight.

www.ncbi.ie

W

Williams Syndrome

Williams Syndrome Association of Ireland

Supports members through an annual programme of events and works to make medical, teaching and other professional groups more aware of the conditions associated with Williams Syndrome.

http://www.williamssyndrome.ie/

Page last reviewed: 09/05/2019
Next review due: 09/05/2022