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/World_NF2_Day_2020_370x280_800_600_s_c1.jpg)
World NF 2 Day May 22nd 2020
See what we're up to for this World Neurofibromatosis Type 2 day
Read More![](https://nervetumours.org.uk/images/made/images/common/Mary_NHS_NF_Nurse_Statement_370x280_800_600_s_c1.jpg)
Statement by Mary Thomas Clinical Neurofibromatosis Nurse UK
A statement on coronavirus by Mary Thomas clinical nurse at Guy's and St Thomas' NHS Foundation Trust
Read More![](https://nervetumours.org.uk/images/made/images/common/O2_Guildhall__Southampton_370x280_800_600_s_c1.jpg)
Shine a Light 2020 Success!
Check out some amazing blue buildings that took part in our Shine a Light On Neurofibromatosis 2020 campaign
Read More![](https://nervetumours.org.uk/images/made/images/common/Sarah_Shine_A_Light_on_Neurofibromatosis_-_370x280-preview_800_600_s_c1.jpg)
Sarah’s Story as told by her Father Clemence
Read more about Sarah's story and her Shining a Light on NF from home for World NF Awareness Day!
Read More![](https://nervetumours.org.uk/images/made/images/common/helen-tomkins_370x280_800_600_s_c1.png)
Statement by Helen Tomkins our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Helen Tomkins specialist Neurofibromatosis nurse in Devon & Cornwall
Read More![](https://nervetumours.org.uk/images/made/images/common/Courtney_Deaken_Story-_370x280_800_600_s_c1.png)
Courtney’s Story
Read more about Courtney's NF Story and how she overcomes her difficulties
Read More![](https://nervetumours.org.uk/images/made/images/common/Toms_NF2_Story_-_No_Laughing_Matter_preview_website_370x280_800_600_s_c1.png)
No Laughing Matter
Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it
Read More![](https://nervetumours.org.uk/images/made/images/common/Shine-a-Light_1600x900px_1600_900_80_s_c1StaySafepreview_800_600_s_c1.png)
Shine A Light on Neurofibromatosis 2020
Find out what we're up to for our Shine A Light campaign this year!
Read More