Research to Reality in Rare Syndromes

Cerebra Network
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 The Cerebra Network are excited to launch Research to Reality in Rare Syndromes. This new podcast series brings researchers, professionals and parent carers together to discuss the challenges, evidence, and practical solutions that can make a real difference to families' lives. 

Episodes

  1. 1d ago

    Episode 1: When Sleep Doesn’t Come Easily: Supporting your Child’s Sleep

    Welcome to the first episode of Research to Reality in Rare Syndromes, a podcast for families caring for children with rare genetic syndromes and neurodivergent children. In this episode, Dr Marie Dunnion is joined by Professor Caroline Richards and Dr Rory O’Sullivan from the University of Birmingham to talk about their sleep research and share practical insights to help support your child’s sleep. Caroline has published extensively on sleep in children with rare syndromes such as Angelman syndrome, Smith-Magenis syndrome, and tuberous sclerosis complex, while Rory’s PhD explored how sleep affects children’s cognition and daytime behaviours. See below for links to resources, charities, support services, and related research: Resources Cerebra: FLACC Pain Scale Infographic Cerebra: Get Your FREE Sleep Tips BookletCerebra: Sleep Advice Service Cerebra: Sleep - A Guide for ParentsCerebra: Sleep CardsCerebra Charity Website – the national charity dedicated to helping children with brain conditions and their families discover a better life together.My Communication Passport – a practical and person-centred way of supporting children, young people and adults who cannot easily speak for themselves.Charities and Support Services  Contact: the charity for families with disabled childrenMencapScope | Disability charity UKSMS Foundation UK: supporting SMS families for a positive future SMS Foundation UK: join our Community – join to become a family, or professional, member of The SMS Foundation UK.SWAN UK (Syndromes Without A Name) - Genetic AllianceUnique | Understanding Rare Chromosome and Gene DisordersResearch RESEARCH | Cerebra Network – there are a number of projects happening across the network.A cross-syndrome cohort comparison of sleep disturbance in children with Smith-Magenis syndrome, Angelman syndrome, autism spectrum disorder and tuberous sclerosis complex | Journal of Neurodevelopmental Disorders | Full TextDevelopmental trajectory of sleep in children with Smith-Magenis syndrome compared to typically developing peers: a 3-year follow-up study | SLEEP Advances | Oxford AcademicFrontiers | Multi-method assessment of sleep in children with Angelman syndrome: a case–controlled studySleep in children with Smith–Magenis syndrome: a case–control actigraphy study | SLEEP | Oxford AcademicRelated Article Zeitgebers (time cues) for biological clocksFor any enquiries, please complete the contact form on our website: CONTACT | Cerebra Network

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 The Cerebra Network are excited to launch Research to Reality in Rare Syndromes. This new podcast series brings researchers, professionals and parent carers together to discuss the challenges, evidence, and practical solutions that can make a real difference to families' lives. 

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