Knowsley Family Forum – Rare Genetic Conditions

Little girl with Angelman's SyndromeWe recently held our first Cerebra Family Forum in Knowsley in the north west. We had three informative speakers for this event, providing information on rare genetic conditions and current research projects.

Unique is a charity that supports families of children with rare genetic conditions. Dr Beverly, Searle, their CEO explained how rare chromosome disorders occur and gave an insight and update on current research projects. Beverly also provided information on their and services and publications. Her presentation can be downloaded below.

Elizabeth Halstead, Lead Research Officer for Cerebra, provided an overview of Cerebra’s Research projects and the launch of a new 1,000 families study for parents and carers of children with learning disabilities. This new study aims to provide the largest UK database for information which is essential for future research in this area. Elizabeth’s presentation can be downloaded below.

Dr Caroline Richards, Research Fellow at Cerebra’s Centre for Neurodevelopmental Disorders at Birmingham University, provided an overview of their work, which includes research with families of children with rare genetic conditions. Caroline’s presentation focused on research on sleep and challenging behaviour often prevalent in children with rare genetic conditions.

Fifty two people attended the event and the feedback was fantastic with lots of positive comments about the quality of the presentations and information available. Lots of parents and carers commented they were unaware just how much research is ongoing and many felt it was great to have an event dedicated to rare genetic conditions.

Download Unique Presentation pdf

Download 1000 Families Study Presentation pdf

Visit our research pages to find out more about the exciting research funded by Cerebra at universities across the UK and in Barcelona.