For parents of affected children

Newly diagnosed

Newly diagnosed

This site is written by people like you, parents and carers of children who have genetic disorders. We understand what you’re going through. We have been there, are still there. We are here to help you by sharing what we have learned.

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Living with a genetic disorder

Living with a genetic disorder

We hope this section will arm you with the advice and legal back-up you need. You are not alone.

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Specialist genetic centres

Specialist genetic centres

The United Kingdom and Ireland have a number of specialist genetic centres. Wherever you live you'll find a centre (or a satellite clinic) to help you.

Whether you're looking for help with diagnosis, condition management or anything else to do with genetics, here is the information to help you get through to the right people.

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Benefits, grants and other funding

Benefits, grants and other funding

You might not feel you deserve benefits but the Government recognises having a disabled child is considerably more expensive than a non-disabled one and that families with lower incomes are more likely to have a disabled child. Here we guide you through the benefits system and provide links to other charities.

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Support available locally

Support available locally

Once your child has been diagnosed by the NHS your local authority services should kick in to help with their needs.This is a difficult time for local services. Local authorities have had their budgets slashed. Their spending is under scrutiny. However the care of a child with special needs is considered a frontline service.

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Education

Education

A genetic disorder need not be a barrier to your child receiving a full and satisfying education. They have the same rights to schooling as other children.

There are more decisions as a parent for you to make and careful consideration has to be given at each stage to make sure those are right for your child.

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Research participation

Research participation

This section contains information on the different research projects that are currently recruiting participants.


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