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My child has just been diagnosed with a Rare condition, what do I do now?

Take some time to adjust to this new diagnosis. It can be very overwhelming at first. Reach out and join our private parents support group where you can meet other parents going through the very same. Surrounding yourself with other parents going through the same thing and offering support to one another can be very helpful.

What supports are available to me now?

There are many supports available such as financial support, home help, respite services etc which we have more information on in that section in our members forum.

What does this rare diagnosis mean for my child?

This really depends on the specific condition your child has been diagnosed with. Each condition will have certain characteristics which may or may not affect your child. It is important to note that each child will be affected differently. Developmental delays are common among a lot of children diagnosed with genetic conditions. Having the right supports in place as early as possible is very helpful. Although many of our children may have different genetic conditions they will have a lot of common characteristics so joining our private parents only support group can be a great source of information and more importantly support.

Did my child inherit their condition from me?

Genetic testing should be offered to both parents after a child is diagnosed. This will either confirm or rule out either parent having the same genetic changes present. Genetics counselling should be offered after a diagnoses where everything can be explained in detail.

Some 50% of all genetic conditions are often hereditary because they are passed from parents to their children. 
Genetic conditions are often what's referred to as DeNovo this means that any changes in the gene sequence was not inherited from either parent. They are new mutations and have been absent in families in previous generations.

What is genetic testing?

Genetic testing is a type of medical test that identifies changes in genes, chromosones or proteins. The results of a genetic test can confirm or rule out a suspected genetic condition or help determine a person's chance of developing or passing on a genetic disorder.

Are there any other families living with this condion?

If you register with Rare Ireland Family Support Network we can put you in touch with other families if we have others on our database. All this is done privately and with the utmost confidentiality.

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