Speakers

I have been the CEO of Unique since 2021, but I’ve been involved with Unique for much longer! We joined Unique in 2004 as family members when my husband was identified as carrying a balanced translocation after having multiple miscarriages. We now have three children; two of whom have inherited his balanced translocation. 

I have a PhD in genetics (researching Down’s syndrome) and then lots of years working in the lab. In 2007, I was delighted to join the Unique staff team as one of the Information Officers and apart from three years living and working in Hong Kong, I have worked for Unique ever since. 

Part of my role as CEO is to raise awareness of rare chromosome and gene disorders at all levels, and to do this I sit on a number of boards including the NHS Genomics Clinical Reference Group (CRG), the Joint Committee on Genomics in Medicine and am on the Scientific Advisory Board of the Manchester Rare Conditions Centre and Rare Disease Hong Kong. I am a Trustee for RareMinds and the Adelphi Genetics Forum.