National Supports - Charity / Advocacy

This organisation offers help and support for individuals and families affected by 22q11.2 deletion/DiGeorge Syndrome/VCFS.

ADHD Ireland provides up-to-date information, resources and networking opportunities to individuals with ADHD, parents of children with ADHD and the professionals who serve them. 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, which also includes details of their online parent support group. 

As I Am runs a programme of support and information for parents of recently diagnosed children, as well as a support programme for teenagers with autism both in person and online. You can find out more about those support programmes here. As I Am also offers training and conferences on autism.

Aspire is a national organisation which supports and assists both the autistic individual and their support network. They also advocate on behalf of autistic people and provide them with the tools to advocate for themselves.

They manage a Residential Service, where they assist individuals in gaining independent living skills. They operate a Social Enterprise, called Aspire Productions. This is a media production company that provides paid employment, opportunities, support, training and engagement for adults with ASD / AD. They also run a number of social meet up groups  and support programmes for both adults and youths.

They provide training and support to schools, colleges, workplaces and community services, as well as easy read guides and information to assist the autistic person and their family.

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.

Child Vision is the National Education Centre for Blind Children. Their National Network Service hosts events annually for families and professionals, both on-campus and across the country, sharing information, support and advice for those supporting children with a visual impairment in their local communities. Each year they host over 50 events including regular informative parent sessions on accessing and understanding your entitlements, professional and peer training events and family fun camps and weekends.

This website has been developed for families with a child requiring inpatient and outpatient hospital care. It shares information to help prepare for hospital and appointments. It also provides information on family supports, government supports and a database of support organisations, including patient/condition-specific organisations.

Chime is the national charity for deafness and hearing loss. It offers family support services, as well as running parent and toddler group events for the 0-5 years age bracket. The groups provide a comfortable space for peer support and shared experiences. From time to time, they also have guest speakers to chat about a range of interesting topics, relevant to your child’s development. You register your interest in attending one of these events through your local Chime office. 

CF Ireland (CFI) is a voluntary organisation. It provides advice, information and advocacy services for family, as well 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 whose remit includes the delivery of direct 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 acquire the knowledge and skills to effectively advocate on behalf of their children, in particular in relation to accessing education and health services supports.

Down Syndrome Ireland provides support and services to people with Down Syndrome and their families though a national office and 25 branches nationwide. They offer ‘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 that enhance the lives of thousands of children and adults with Down Syndrome across the country. You will find the details of Down Syndrome Ireland’s 25 branches and their supports here

They offer a range of services to support people with epilepsy and their families. They have Community Resource Officers that offer a nationwide service co-ordinated through their regional offices and head office in Dublin. They provide support and information for people with epilepsy, their families and their carers. 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 is a national charity supporting the 500,000+ family carers across the country who care for loved ones such as children or adults with additional needs, physical or intellectual disabilities, frail older people, those with palliative care needs or those living with chronic illnesses, mental health challenges or addiction. You will find the full list of supports offered by Family Carers Ireland here. They also run events around the country and you can see that full list of events here. These are a mix of in-person and online events. Here also are the contact details for their Support Offices around the country. 

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 here. 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.

iCAN is a volunteer charity providing support and information and advocating for best care for those affected by Juvenile Idiopathic Arthritis (JIA). iCAN offers help through its online support network, family days out and information days. See here for the contact details of iCAN's local family representatives. 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. 

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. For a county-by-county list of their services and supports, go to the Find Us page on their website.

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 section (frequently asked questions) which explains how the charity can support families. 

Laura Lynn provide palliative care and support for children with life-limiting conditions. It runs Hazel House, which provides respite care to children with severe/profound intellectual disability and complex care needs with a maximum occupancy of seven children at any time. You can find more information on their respite service and its referral process here. 

Little People of Ireland (LPI) is the national charity in Ireland for people with dwarfism-related conditions. It promote awareness and understanding of the various conditions, as well as providing environmental, educational and occupational guidance and advice.

Muscular Dystrophy Ireland (MDI) aims to provide information and support to people with neuromuscular conditions and their families through a range of support services. MDI supports advocating for services to enable people with neuromuscular conditions to fully participate in society and to live a life of their own choosing. MDI has a Family Support Service, a Youth/Respite Support Service, and an Equipment Loan Service. 

The National Council for the Blind in Ireland (NCBI) works to support people who are blind or vision impaired in all aspects of their lives. The NCBI Children and Young Person’s services supports the development and independence of children and young people, from recent diagnosis up to third-level education. See here for the details of those services. 

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 with young people and medical professionals to help young people prepare to move to adult healthcare.

The Transition Stages will help guide you from just starting to think about moving to adult services, right through to making the move. The  Transition Guide will help you prepare and 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 fund home and family support, respite assistance, and bereavement counselling. It organising 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. In the UK, USA, and Australia these specifically dedicated support groups have been in existence for many years.

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'.

Join this group to connect with other families, be kept updated on upcoming news and events, plan and share your ideas to create a SWAN Ireland that fulfils your vision of what you, and other families, want SWAN Ireland to be.

The Teen Parents Support Programme (TPSP) is the only  targeted community-based support service for teen parents in Ireland. They work mainly with young people who become parents when they are aged 19 years or under and support them until their children are 2 years of age. Some parents who are older than this may also be supported depending on their circumstances. The TPSP is currently available at 11 locations throughout the country. The TPSP also provides support to grandparents and other family members who play a role in the life of the young parent.

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.