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.
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.
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.
Attention deficit disorder (ADD), Attention deficit hyperactivity disorder (ADHD)
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.
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.
The Access and Inclusion Model (AIM)
The goal of AIM is to create a more inclusive environment in pre-schools, so all children, regardless of ability, can benefit from quality early learning and care. The model achieves this by providing universal supports to pre-school settings, and targeted supports, which focus on the needs of the individual child, without requiring a diagnosis of disability.
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.
Headway Ireland
Provides services and supports for people living with Acquired Brain Injury.
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.
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.
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.
D
Down Syndrome
Down Syndrome Ireland
Offers support and services to people with Down Syndrome and their families throughout Ireland.
Deaf and Hard of Hearing
Chime is 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.
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.
F
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.
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
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.
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.
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.
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.
M
Muscular Dystrophy
Muscular Dystrophy Ireland (MDI)
Supports people who have muscular dystrophy and related neuromuscular conditions and their families.
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
Get information about microcephaly from the US Centre for Disease Control and Prevention
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.
Prader Willi Syndrome Association (USA) has information about the condition on its website:
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.
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:
Visit the Enable Ireland website
Spina Bifida
Spina Bifida and Hydrocephalus Ireland
Provides essential information, support and advice for everyone living with spina bifida/hydrocephalus.
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.
Spinal Muscular Atrophy
Muscular Dystrophy Ireland (MDI)
Supports people who have muscular dystrophy and related neuromuscular conditions and their families.
Syndromes
Information on many syndromes and disorders can be found on the US National Human Genome Research Institute’s website.
T
Turner Syndrome
Turner Contact Group Ireland
Provides information about Turner Syndrome and support resources
Turner Syndrome Society of the United States advances knowledge and facilitates research into Turner Syndrome.
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.
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.