National Supports - Charity / Advocacy

This organisation offers help and support for individuals and families affected by 22q11.2 deletion sydrome. Their aim is to provide lifelong support for those impacted by 22q11.

ADHD Ireland’s objective is to support young people and adults with ADHD, and their carers and families too. They provide a phone and email helpline. They also run an ADHD School Friendly Programme for teachers and schools. You can see a list of their events here. 

The Anne Sullivan Centre provides a range of services for people who are deafblind across the country. The services they provide include: 

• Residential
• Day Services
• Outreach
• Information and Advice
• Assistive Technology Library

AsIAm runs a programme of support and information for parents of recently diagnosed children. It also runs a support programme for teenagers with autism. 

The AsIAm Autism ID Card was created to help Autistic people navigate their daily life more easily. It contains a short description of a person's Autistic support needs and a reminder that the person with the card may need some extra help and support. 

Aspire supports the autistic person and their support network. They also advocate on behalf of autistic people and provide them with the tools to advocate for themselves.

They run social meet ups and support programmes for both adults and youths.

Their Advice and Guidance section includes information on autism, education, and independent living.

Barretstown offers free, specially designed camps and programmes for children and their families living with a serious illness – supported behind the scenes by 24-hour on-site medical and nursing care. You can read more about their range of camps here. 

BUMBLEance is the official Children’s National Ambulance Service of Ireland. They provide safe and comfortable transportation for Ireland’s youngest patients as they travel between their homes and hospitals, hospices, treatment centres, and respite centres nationwide.

This website is for families with a child requiring inpatient and outpatient hospital care. It shares information on preparing a child for hospital or procedures. They also have a Family Support Officer, available to speak to daily from 8.30am-3.30pm. You will also find this helpful guide on the website, What to expect if your child is going to hospital.

ChildVision is Ireland’s only dedicated centre for children with sight loss, some of whom also have profound sensory impairments and additional disabilities. They offer campus-based services as well as national specialist services. They also have an equine therapy centre. They have a reading service which transcribes school books for visually impaired children. They also have a library service. 

They share educational resources, and have also prepared this guide on Entitlements for Blind, Visually Impaired and Disabled Persons.

Chime supports Deaf and Hard of Hearing people living in Ireland. It has a Children and Families' Team, as well as support for teenagers and young adults. Find your local Chime centre.  

Crosscare provides homeless, housing, and welfare support. It also runs youth-led programmes for young people from the ages of 10 to 24. Its Information & Advocacy Service supports people with low or no income, Irish emigrants, migrants into Ireland, refugees, and asylum seekers. Crosscare also has a website called Crosscare Youth Information aimed at young people aged 15-25 years.

Cystic Fibrosis Ireland (CFI) gives advice and information to members on any issue relating to Cystic Fibrosis. It has an advocacy service. It also gives exercise, transplant and fertility grants. It shares regular information updates on new treatments and developments in Cystic Fibrosis, through its website and quarterly newsletter ‘Spectrum’. See its information for new parents in the Resources section of the website, as well as its Benefits and State Supports page and its Grants and Support services page. 

DESSA is a charity that delivers training, advocacy and information support services to individuals and families with lived experience of disability and to organisations supporting them. DESSA runs the Empowering Parents Programme for the parents of disabled children and young people. It aims to support parents to advocate on behalf of their children, in particular in relation to accessing education and health services supports.

Down Syndrome Ireland offers ‘all-through-life’ supports to people with Down Syndrome with specialists in the areas of health, speech and language, early development, education and adult education and independence. Down Syndrome Ireland has 25 branches nationwide.

Dyslexia Ireland works with and for people affected by dyslexia, by providing information, offering appropriate support services, engaging in advocacy, and raising awareness of dyslexia.

Dyspraxia/DCD Ireland delivers supports and services to young people and adults with dyspraxia/Developmental Coordination Disorder (DCD) and their families and supporters.

They also work with professionals like teachers, psychologists, occupational therapists, mental health professionals, and employers who support people with dyspraxia/DCD.

They offer a range of services to support people with epilepsy and their families. You'll find the details for the Dublin, Wicklow and Kildare Community Resource Officers here. As part of their work, the Community Resource Officers raise awareness of epilepsy through their information events. You'll find the full list of events organised by Epilepsy Ireland here.

Family Carers Ireland offers a range of supports to the 500,000+ carers across Ireland. They also run events. These are a mix of in-person and online events. They also have Support Offices around the country. 

Membership is €20 a year (free for carers under the age of 24). The Family Carers Ireland (FCI) membership card gives you access to over 100 discounts and offers. You'll also receive a quarterly newsletter on their free supports and services. 

They have also prepared a Booklet on Family Carer Rights and Entitlements

The Family Resource Centre (FRC) programme is Ireland’s largest National Family and Community-based support programme. There are 121 Family Resource Centres across Ireland. Find your local centre and the supports it offers. Supports can vary from childcare to advocacy to parenting programmes and counselling to advocacy and supporting the development of new local community groups. 

Heart Children offers practical help and support for all individuals and families affected by congenital heart disease. Services include setting up local groups, financial assistance, publications, and special events for children.

The Hidden Disabilities Sunflower is a simple tool for you to voluntarily share that you have a disability or condition that may not be immediately apparent – and that you may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces. 

See the list of over 900 non-visible disabilities, chronic illnesses and health conditions that Sunflower wearers live with

You can purchase a lanyard here.

Use this map on the Hidden Disabilities Sunflower site to find sunflower-friendly places in Ireland and beyond. 

iCAN provides support and information on best care for those affected by Juvenile Idiopathic Arthritis (JIA). iCAN offers help through its online support network, family days out and information days. iCAN has prepared this Children's Book on Juvenile Arthritis. See also its page on its support network for teenagers. 

Inclusion Ireland is the national association for people with an intellectual disability. It campaigns for changes in services and legislation that will improve the quality of life and participation of people with an intellectual disability in Ireland. Its Connect Family Network map lists over 100 national and local intellectual disability support groups, nine of which are in the CHO7 area. 

This website is useful for families whose child has been given a diagnosis, and for those who have a concern about a possible diagnosis of a disability. They cover topics such as: learning your child has a disability; telling others about your child's disability; information about the professionals you may meet; getting advice about searching for health information on the Internet and learning about Entitlements and Benefits that you and your family may be able to access. The website also provides translations of these pages in Irish, French, Lithuanian, Polish, Brazilian Portuguese, Finnish, Romanian, and Russian. 

The Irish Wheelchair Association operates community centres with day services, member transport, training, holidays, outings, school leaver activities and outreach programmes through 58 full and part-time community centres around Ireland. The IWA have a county-by-county list of their services and supports.

Jack & Jill is a nationwide charity providing in-home nursing care and respite support for children up to the age of 6 with severe to profound cognitive delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. See their FAQs (frequently asked questions) which explain how the charity can support families. 

Laura Lynn provides specialist palliative and supportive care services for children with life limiting conditions and their families. It runs Hazel House, which provides respite care to children with severe/profound intellectual disability and complex care needs. Learn more about their respite service and its referral process. 

Little People of Ireland (LPI) is the national charity for people with dwarfism-related conditions. It promotes awareness and understanding of the various conditions. It also provides environmental, educational and occupational guidance and advice.

Muscular Dystrophy Ireland (MDI) gives information and support to people with neuromuscular conditions and their families. MDI has a Family Support Service, and Youth Service. 

The National Disability Authority (NDA) is the independent statutory body that provides information and advice to the Government on policy and practice relevant to the lives of persons with disabilities.

Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland. It works across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.

Sickle Cell and Thalassaemia Ireland is the official organisation set up and run by Sickle Cell and Thalassaemia families, patients and volunteers to raise awareness and support of Sickle Cell and Thalassaemia in Ireland. It does this through educational workshops, seminars, media, printed information, promoting genetic screening and encouraging public policy change.

SBHI has thousands of members nationwide consisting of those with spina bifida and/or hydrocephalus, their parents, siblings, family, friends and carers. SBHI offer a Family Support Service, as well as Education and Training and a Recreation and Respite Service.

The Stepping Up website was created to help young people prepare to move to adult healthcare.

The Transition Stages will guide you from starting to think about moving to adult services, right through to making the move. The  Transition Guide will help you prepare. A range of other useful information, personal stories, and checklists will help you know what to expect, and how to find support. 

S.O.F.T is a voluntary group providing support for families of children born with Patau’s Syndrome (Trisomy 13), Edwards’ Syndrome (Trisomy 18) and related chromosomal disorders. It provides information to families, as well as putting them in contact with each other. It funds home and family support, respite assistance, and bereavement counselling. It organises family gatherings and professional speakers and also links in with S.O.F.T organisations worldwide. 

SWAN Ireland is a new Irish support group for people and families who have or whose child/children have a syndrome with no known diagnosis.

SWAN UK defines 'SWAN' as when a person is believed to have a genetic condition, where genetic testing was unable to identify the cause. Some children with SWAN might be described as presenting with 'global developmental delay' or 'failure to thrive'.

Read more about the group. 

Treoir provide a free, confidential, specialist information service for parents not married to each other, living together or apart, their extended families, and those working with them. Information is available on Legal, Social Welfare, and Parenting issues. See their Information Section here. See also their series of animation videos which provide information on Custody and Access, Guardianship Rights, Unmarried Fathers information and Child Maintenance. See also their Groups Section, which shares information on the different family members who might be caring for a child, or supporting the care of that child, such as Cohabiting Parents, Grandparents, Shared Parenting and Kinship Carers. 

Unique is charity working to support a global network of families and individuals affected by a rare chromosome or genetic disorder. It can help you understand more about your child's disorder and match you with families for support. You can read their free Rare Chromosome and Genetic Booklets here. See also their Glossary of genetic /genomic terms. 

Variety runs a Recycle Mobility Programme that focuses on promoting access to upcycled specially adapted trikes, for children who cannot use conventional bicycles. This initiative offers inclusion to children of different abilities, and as the trikes are pre-loved, making it also environmentally friendly.  Their Heart of Learning Programme provides upcycled iPads to schools and individuals who might need additional support in their learning. See their application page here for more information on both programmes.

Vision Ireland is Ireland’s national sight loss agency. They work with children and adults across the country through a range of programmes, all designed to ensure the individual can live life confidently and independently.

Their Children and Young Person’s services supports the development and independence of children and young people, from recent diagnosis up to third-level education.