Useful Information

INFORMING FAMILIES

The Informing Families website www.informingfamilies.ie  provides information for parents and professionals at the time of a child’s diagnosis with a physical, sensory or intellectual disability, or when there are concerns about a possible diagnosis.  The Informing Families website was developed by the National Federation of Voluntary Bodies in consultation with families and professionals. It incorporates information for parents, professionals and developed best practice guidelines for informing families of their child’s disability, and supporting families receiving this news.

FAMILY CARERS IRELAND

Family Carers Ireland is a registered charity founded in 2016.

Family Carers Ireland provides a variety of supports and services to family carers. These include training for carers, home care services, information on carers, rights and entitlements, free legal advice and both one-to-one counselling and personal advocacy services. Further information can be found on www.familycarers.ie

DEPARTMENT OF CLINICAL GENETICS

The Department of Clinical Genetics (DCG) provides a public genetics service to referring clinicians for patients and families in the Republic of Ireland affected by, or at risk of, a genetic disorder.  It is estimated that European populations have a 6%-8% lifetime prevalence of having a rare disease, the majority of which are genetic.  DCG provides public diagnostic services for a broad range of hereditary disorders and, because of the familial nature of genetic disorders, serves both adults and children. www.genetics.ie

ORPHANET

Some conditions children live with are extremely rare. A useful link is https://www.orpha.net/consor/cgi-bin/index.php.

Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases and ensure equal access to knowledge.

UNIQUE

https://rarechromo.org/ is a registered charity which aim to provide specialist information relating to many hundreds of different rare chromosome disorders and autosomal single gene disorders, to inform parents, carers and professionals.

Unique aims to facilitate a network of families across the world living with rare chromosome disorders or autosomal dominant single gene disorders, bringing them together both in person and virtually for invaluable mutual support. Increasing awareness and understanding of what its like to live with these disorders.

EPILEPSY IRELAND

Epilepsy Ireland was established in 1966 with the goal of improving the quality of life of people with epilepsy in Ireland.

Epilepsy Ireland’s vision is to achieve a society where no person’s life is limited by epilepsy.

Epilepsy Ireland provides support and information services, communicating, raising awareness and advocating about epilepsy. Providing education and training. Undertaking and supporting epilepsy research.

Epilepsy Ireland headquarters are based in Dublin with a number of regional offices in Cork, Dundalk, Galway, Kerry, Kilkenny, Letterkenny, Limerick, Sligo and Tullamore

For more information visit www.epilepsyireland.ie

CHILDVISION

ChildVision is the only place in Ireland totally dedicated to the education and therapy needs of blind and multi-disabled children.

ChildVision looks after children from all over Ireland ranging in age from birth to 23 years of age. Meeting the individual needs of each child in ChildVision is the core of their work. All staff work together to realise the unique potential with each boy and girl no matter how severe the disability. The team includes speech and language therapists, occupational therapists, teachers, nurses, braille specialists, social care workers, pet and equine therapists. All services are free of charge. For more information visit www.childvision.ie

HANEN CENTRE

The Hanen Centre focuses on early language intervention for children with language delays.

The Hanen Centre is committed to supporting the most important people in a young child’s life to promote the best possible language, social and early literacy skills. Parents, professionals and academia. www.hanen.org

LAMH

Lamh is a manual sign system used by children and adults with intellectual disability and communication needs in Ireland. Lamh signs are used to support communication. Lamh supports communication between parents, children, siblings, friends and professionals. It can be a setting stone to communication with the world. If you are new to lamh find out more about using and learning lamh at www.lamh.org

SPECIAL NEEDS PARENTS ASSOCIATION

Special Needs Parents Association is a national parent-run organisation which provides support and information for families who have children with disabilities and special needs. They can provide assistance for parents with guidance, direction, advice and help. More information visit www.specialneedsparents.ie/

ROLLERCOSTER

www.rollercoaster.ie is the leading website in Ireland for mums and mums-to-be and has been advising on parenting since 2000. It supports members with quality content while also publishing user generated discussion forums on the highs and lows of being a parent.

SOCIAL MEDIA

Online support groups can offer people emotional support, practical support and educational resources through online closed support groups, peer support and parent to parent forums.

An increasing number of online support groups have embraced the features of social networking. However, little is known about how parents use and benefit from these features.