Covid-19 Impact on Wellbeing in Families of Children with Rare Neurogenetic Disorders (CoIN Study)
29 July 2020

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
_1_800_600_s_c1.jpg)
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More_1_800_600_s_c1.jpg)
NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
Read More_3_800_600_s_c1.jpg)
Running for a Cure: Laura and Gonzalo Take on Half Marathons for NF1
Laura and Gonzalo; founders of CureAge Therapeutics, lace up for NF awareness.
Read More
Diet, fatigue and NF1
Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
Read More
Our Ambassadors
NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
Read More
London Marathon 2025 Team NTUK
Congratulations and a big THANK YOU to Team NTUK for their superb efforts
Read MoreIan’s Story
Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
Read More
London Marathon 2025
Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
Read More
Nerve Tumours UK Virtual Coffee Mornings
Chat and connect in our newly announced NTUK Virtual Coffee Mornings
Read More