Helpline 07939 046 030

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

Filter by Date
Category
Reset

Stuart’s Schwannoma Story Part One

Stuart describes how certain symptoms led to a Schwannoma discovery

Read More

Joy’s NF1 story

Joy describes living with NF1; her son's diagnosis and support at school; fundraising and shining a light on NF

Read More

A man on a mission: Onno Faber and his NF2 journey

Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE

Read More

Kate’s NF1 Story & DanceAthon

Kate describes her son's NF1 journey and how NTUK supported them

Read More

World Mental Health Day

Your mental health is as important as your physical health

Read More

Strictly Come Running: London Marathon Class of 2021

Congratulations to our class of 2021 London Marathon runners

Read More

Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting

Read more about the England NF2 meeting - working together to improve the experience of NF2 patients

Read More

Eden Study

Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1

Read More

Douglas Thomson’s NF1 Story

Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him

Read More