Useful links
The DDD Study - Deciphering Developmental Disorders
The aim of the DDD study is to advance clinical genetic practice for children with developmental disorders by the systematic application of the latest microarray and sequencing methods.
Recruitment into the DDD study has now finished. The researchers are analysing every child recruited to the study, including those where parental samples were not received.
The DDD Study is aiming to issue a report to the clinical teams on all participants as soon as possible but research on undiagnosed families will continue until at least 2021.
UNIQUE
The Rare Chromosome Disorder Support Group
Unique is a UK-based charity which provides a source of information and support to families and individuals affected by any rare chromosome disorder, and to the professionals who work with them.
SWAN UK
SWAN UK (syndromes without a name) is a dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK.
https://www.undiagnosed.org.uk
