Contacting other families
At GDUK we have a database where you can look for symptoms shared with your child if you don’t yet have a diagnosis.
If you have been told your child’s disorder you can use this tool to find other families with a child affected by the same condition.
The database also includes support groups, where one is established. Or you can find out how to start your own.
We work in close partnership with condition-specific smaller charities and support groups. Search our directory for one that supports the condition affecting your family http://www.geneticdisordersuk.org/charitiesandpatientgroups/charitiesandpatientgroupnetwork
For conditions so rare that no support group is in place take a look at our network http://www.geneticdisordersuk.org/gduknetwork/ where parents with an affected child have made contact to try and connect with others affected by the condition. If no network page is set up for your condition we will happily help you set one up.
LINKS TO HELPFUL WEBSITES AND SOCIAL:
Genetic Alliance: www.geneticalliance.org.uk
Together For Short Lives https://www.togetherforshortlives.org.uk/
www.downssideup.com – Natty has Down’s syndrome and is a clothing model
http://www.adifferentviewblog.co.uk/ – Ella has Down’s Syndrome
https://planetelliott.wordpress.com/ – Elliott has a rare chromosomal disorder
Special Books By Special Kids – https://www.youtube.com/channel/UC4E98HDsPXrf5kTKIgrSmtQ
specialneedsjungle.com – information about government policy and support for parents with disabled children.
Please contact us if you have seen a useful website or you write a blog about genetic disorder or if you have seen one you like. We’d love to share it with others.