USEFUL LINKS

 

We want the content of our website to be useful to those who visit our site, but do not warranty our materials and cannot promise that any of the content will be useful to any particular person or for any specific use. We also ask that visitors contact us if they have a comment or objection to any material on our website by emailing tech.22q11ireland@gmail.com.

 

22Q11 Ireland also recommends that you contact an appropriate professional before acting on any advise on this site or any others.

EDUCATION

 

My Special Education Learning Centre (MySELC) is your place for the sharing of Special needs resources and ideas.

Information on education in Ireland with specific information on special needs education

The National Council for Special Education (NCSE) was set up to improve the delivery of education services to persons with special educational needs arising from disabilities with particular emphasis on children. 

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GENERAL INFORMATION

Caring for a child with a disability

RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.

Information on parenting a child with learning disabilities or ADHD

Family Carers Ireland, emerges from the coming together of two long standing charities of over 25 years – The Carers Association and Caring for Carers in 2016. The merger brings the best of both charities together whilst broadening the range of services and supports to family carers and giving one national voice to represent fairness for carers.

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MEDICAL INFORMATION

An interesting and useful overview of Genetics

Great Ormonde Street Document on speech and lanaguage development in the school years

The National Rare Diseases Office provides current and reliable information about genetic and rare diseases to patients, families and health professionals.

The programme has been set up to ensure staff in the health and care system have the knowledge skills and experience to keep this country a world leader in genomic and precision medicine. 

Rapid Accurate Prenatal Non-Invasive Diagnosis

A hub for secure data sharing within the rare disorder community

This clinic is the first of its kind in the world to focus on adults with 22q11.2 Deletion Syndrome (22q11.2DS).

The Genetic and Rare Diseases Information Center (GARD) is staffed by experienced information specialists to answer questions in English and Spanish from the general public, including patients and their families, health care professionals and biomedical researchers.

The website of the Department of Clinical Genetics at Our Lady's Children's Hospital, Crumlin (OLCHC).  Here you will find information about the department, including the services we offer, the staff in the department, and useful resources for children, parents and other health professionals.  Click on the headings and subheadings to be taken to the relevant sections of the website.

This organisation provides personalized information to people whose lives have been touched by VCFS and who are seeking applicable research and clinical expertise regarding the management of the syndrome.

The MIND Institute's 22q11.2 Research Center and Clinic is directed by Dr. Tony J. Simon and funded by the National Institutes of Health. Their mission is to investigate, explain and eventually treat the impairments in cognitive function experienced by children with neurodevelopmental disorders.

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SUPPORT GROUPS

 

Dedicated to raising awareness for 22q11.2 Deletion Syndrome while connecting, supporting and offering accurate information for families affected by 22q.

Supporting children and families with CHD

Max Appeal! is a UK registered charity supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion

They provide support and information for families who have children with disabilities and special needs in Ireland regardless of age or diagnosis

Provides support and information for parents of children affected by cleft lip and palate and those directly affected by the condition

Improving the quality of life for individuals affected by the 22q11.2 syndromes through family and professional partnerships.

Support and information for families of children with rare disorders.

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Call us: Anne @ 087 7412856

Registration No. CHY17647

Ireland's National charity for children and adults diagnosed with 22q11.2 Deletion Syndrome. DiGeorge Syndrome and VCFS.

© 2017 by 22q11 Ireland 

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