Cerebra Network for Neurodevelopmental Disorders: New Collaborative Research Network Investigates Rare Disorders

Rare disease research faces many obstacles: lack of participants, lack of funding, and lack of interest are just a few. Now, the charity Cerebra has launched a network to take on research focusing on rare, genetic, neurodevelopmental disorders. Titled the Cerebra Network for Neurodevelopmental Disorders, it will look for new, unique ways to support children with the inherited and neurodevelopmental conditions.

About the Network

The research effort will be led by a diverse, knowledgeable team sourced from four leading institutions. Dr. Jane Waite from Aston University, Dr. Hayley Crawford from the University of Warwick, Dr. Jo Moss from the University of Surrey, and Dr. Caroline Richards from the University of Birmingham all came together to provide their expertise. They will look into conditions like tuberous sclerosis complex, fragile X syndrome, Cornelia de Lange syndrome, Down syndrome, Smith-Magenis syndrome, and Prader-Willi syndrome.

The hope is to work with patients and their families to provide new, viable solutions in regard to management, support, and care. Through collaboration, these medical professionals hope to uncover a better understanding of neurodevelopmental diseases.

The Network’s Launch

Officially, the network will be launched on June 3rd in a virtual event. From 10 AM until 3:45 PM, the four researchers will illustrate the obstacles already in place for those with intellectual disability associated with neurodevelopmental disorders.

The event is split in half, with the first portion of the day focusing on the families and caregivers of those with rare, inherited disorders. Until 12:15 PM, experts will conduct question and answer sessions, explain the family experience when it comes to research, and expand upon the research the network plans to operate.

This session is followed by the Research Focus Session, which contains three major themes: mental health, sleep and behavior, and autism. This session will also contain a question and answer session, along with more information on the research being planned and the clinicians conducting it.

You can register for the event here.

Looking Forward

In the end, the network’s goal is to improve the lives of those with rare, neurodevelopmental disorders associated with intellectual disability. Through the knowledge and expertise of the research team, Cerebra will hopefully be able to accomplish this goal.

Find the source article here.

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