Media

In this section you can read various research news articles that have important topics relating to rare genetic disorders.

This section is for any parents or professionals who wish to read up to date information about syndromes and to broaden their knowledge.

The articles are ordered with the newest piece of research first and the articles can also be filtered by syndrome by using the filter.

Angelman

Research Study: Sleep in Children with Angelman Syndrome

Jayne Trickett, Mary Heald and Chris Oliver, researchers from the Cerebra centre of neurodevelopmental...

Angelman

Sleep: A New Cerebra Guide for Parents

A new guide for parents has been developed by researchers at the Cerebra Centre for Neurodevelopmental Disorders, and the Cerebra sleep team. This guide has been developed to help parents and carers understand the nature of sleep problems in children with intellectual disability and what can be done to improve sleep. Part one describes common sleep problems in individuals with intellectual disability and how these sleep problems are assessed. Part two gives a brief overview of sleep problems in specific genetic syndromes. Part three outlines some strategies which may help to reduce or improve sleep problems. Read the full guide here or download this PDF version

Angelman

Neurodevelopmental outcome in Angelman Syndrome: Genotype-phenotype correlations

Angelman syndrome (AS) is a neurogenetic disorder that is characterised by intellectual disability, developmental...

Syndrome Tags

Angelman

Eating Behavior, Prenatal and Postnatal Growth in Angelman Syndrome

Clinical characteristics of Angelman syndrome include severe intellectual disability, developmental delay and lack of...

Angelman

Cerebra sleep seminar 13th November - presentations now available

Cerebra hosted a sleep seminar in Birmingham focusing on sleep in children with developmental...

Angelman

Learning in Angelman syndrome

Over the past three years, researchers at the Cerebra Centre for Neurodevelopmental Disorders have...

Angelman

Food related issues in Angelman and Prader-Willi syndromes

Angelman (AS) and Prader-Willi (PWS) syndromes are caused by missing genetic information on the...

Angelman

New perspectives on understanding challenging behaviour

Some individuals with intellectual disabilities can show behaviours such as self-injurious behaviour and aggression...

Angelman

Research Study: changes with age in genetic syndromes

Over the last ten years researchers from the Cerebra Centre for Neurodevelopmental disorders have frequently asked families what they would like research to address. This question is posed so that studies can be developed that fit with families needs and interests. Often, the key question that families pose is ‘what can I expect in the future for my child?’ This is a question about change, growth and development, and it highlights the uncertainty that many families feel when looking towards the future. Of course we cannot say for certain what will happen to children as they grow older as there are so many factors that can affect this; however, we do know that a person’s genetic syndrome may impact on the way a person develops and knowing a little more about this might be helpful to families. As researchers and clinicians, we often feel that our current answers to families’ questions about change over time are unsatisfactory because much of the research that has been carried out has been done in a...

Angelman

Parent Story Workshop

The FIND website would not be what it is today without the input from...