NEWLY DIAGNOSED

READ THIS FIRST

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 want to help you by sharing what we have learned.

Our aim at Genetic Disorders UK is to create a safe place for you to find answers to the questions piling up in your head. If you would like to suggest any other subjects we should cover or contribute by sharing your experience or information, please contact us. If you would like more information about your child’s specific condition ring our hotline or email us.

Your child’s genetic disorder is not your fault. You did not will this upon your child.

A genetic disorder does not mean the end of their world or yours.

The unfamiliar jumble of letters and numbers which form their diagnosis will eventually stop feeling as overwhelming as it does now.

There is so much help and information out there, much of which you will find on this site or be directed to from here.

From the best therapies to help you and your child, to the systems and funding available, we will point you in the right direction.

In time, you can find advice here on helping find pre-schools, schools, doctors, and establishing your family’s legal rights.

You might not want to know it all now. We’ll be here when you are ready to find out more.

You are not on your own.

Search The Internet

You have found us on the internet so you are already researching what you know is wrong or might be wrong with your child.

The internet is a powerful tool for diagnosis and support but there is a lot of misinformation out there and some of the things you read might be frightening.

Contacting other families

You are not alone. Even if your child has an incredibly rare disorder there is probably another child in the world who has the same.

Managing the news within your Family

The impact of being told your child has a genetic disorder that might have a life-long impact is difficult for any parent or carer. You will need to process this news while looking after your child, your family. and yourself. Find strategies to cope written by an expert counsellor here.