Covid-19 Impact on Wellbeing in Families of Children with Rare Neurogenetic Disorders (CoIN Study)
29 July 2020
![](/images/made/images/common/picsea-EQlTyDZRx7U-unsplash2000x700_800_600_s_c1.jpg)
Are you the parent of a child aged 0-16 with a rare genetic and/or neurodevelopmental disorder?
You can help to better understand the impact of Covid19 on the wellbeing of families of children with rare genetic and neurodevelopmental disorders. If you fit the criteria, Kings College London and a UK-wide team of researchers (CoIN Study) would like to invite you to take part in a regular online survey.
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. Your responses will be rapidly fed back and used to identify and provide better ways of supporting you both now and in the future.
The survey will take up to 40 minutes to complete the first time you do it and about 15 minutes to complete thereafter. We will ask you to complete the survey once per month until children are back in their usual education.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Runderpants-2019Page-Preview-800-x-500-px_800_600_s_c1.png)
Runderpants Bangor 2019
Have a read about the unqiue but extremely successful event that was Runderpants Bangor 2019
Read More![](https://nervetumours.org.uk/images/made/images/common/FEI-USEPage-Preview-800-x-500-px_800_600_s_c1.png)
Nerve Tumours UK joins up with Face Equality International’s Alliance
We have joined Face Equality International Alliance in an attempt to end discrimination to those with facial differences
Read More![](https://nervetumours.org.uk/images/made/images/common/Bronte-website-headerPage-Preview-800-x-500-px_800_600_s_c1.png)
Bronte’s Story
Have a read of Bronte's story about how she continues to enjoy living her incredibly adventorous and ambitous life
Read More![](https://nervetumours.org.uk/images/made/images/common/BristolPage-Preview-800-x-500-px_800_600_s_c1.png)
Bristol NF1 Information Day 23/03/2019
The day is designed so that our specialists can give you information and insight about NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/adam-buxton-comedy-night-Page-Preview-800-x-500-px_800_600_s_c1.png)
Adam Buxton Comedy Night in aid of Nerve Tumours UK
Our charity comedy night was certainly nothing short of a success. Find out exactly what went down here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Megan-Crews--meet-meganPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Megan
Megan Crews is a 30 year-old special needs tutor in Salisbury. She recently spoke out in The Sun.
Read More![](https://nervetumours.org.uk/images/made/images/common/Fabio-researchPage-Preview-800-x-500-px_800_600_s_c1.png)
How does your visible difference affect you?
Researchers would love to understand your experience of how a visible difference affects your daily life
Read More![](https://nervetumours.org.uk/images/made/images/common/GABYPage-Preview-800-x-500-px_800_600_s_c1.png)
Gabriella’s Story
"I believe everyone should think the same and be kind to people however they look and whatever condition they have."
Read More