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CoIN Study

(COVID-19 impact on wellbeing in families of children with rare neurogenetic disorders)

The CoIN Study, organised by Kings College London researchers, is focused on the impact of the COVID-19 pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders, like Tuberous Sclerosis Complex.

​The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders and how these relate to mental health and wellbeing. Responses will be rapidly fed back to charities and support organisations, such as the TSA, and used to identify and provide better ways of supporting you both now and in the future.

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Latest updates

The latest updates from the CoIN Study team can be found below:

More information

Keep up to date by following the CoIN Study on social media (Facebook:@coinstudykcl; Twitter: @coinstudykcl), where the team post regular updates, related research, and family friendly resources.

To find out more about the CoIN Study or to take part, visit their website here.

You can also read more about Dr Charlotte Tye in our recent interview with her here.

Make a one off or regular  donation

£10 Can allow us to send a welcome pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow