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

#DareToThinkRare
Find out how you can take part in this year's Student Voice Prize 7th annual, international essay competition!
Read More
RARE Champion of Hope Celebration
Join this years RARE Champion of Hope Awards hosted by Global Genes and be inspired!
Read More
A Big “Thanks” for Team Nerve Tumours UK running the London 2020 Marathon!
We want to give a great big thank you to all of you who took part in this year's Virtual London Marathon!
Read More
How To Use Lipspeakers – Support For Those Affected By Hearing Loss
Frances Harris at Bridge Lipspeaking shares how lipspeaking can help those with hearing loss or total deafness caused by NF2
Read More_370x280_800_600_s_c1.png)
Living with Neurofibromatosis Type 1: An Anthropological Study
Get involved and share your story to help increase cross-cultural understanding and awareness of NF1
Read More
Nimo’s NF1 Story
Read Nimo's incredible journey of coming to terms living with NF1 & how Nerve Tumours UK has changed her life for the better
Read More
Georgia’s Schwannoma Story
Read Georgia's inspirational Schwannoma story and how she had to fight for her diagnosis
Read More
Voices of Visible Difference #YoureNotAlone Men’s Campaign
Two-thirds of men with visible difference are affected in their day to day life. Read more
Read More
Childhood Neurological Conditions Survey
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
Read More