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

The Virgin Money London Marathon Goes Virtual

Sign up for your Virtual London Marathon experience Sunday 04.10.2020

Read More

Accessible Online Meetings for those with hearing impairment

Frances Harris talks to us about the difficulties faced by those with NF2 & hearing loss communicating online and solutions

Read More

Pipers to Paris - Ride for Neurofibromatosis

Read all about Mr. Cohen's epic 230 mile bike ride to help support those affected with Neurofibromatosis in the UK

Read More

Artificial Intelligence & Disability Recruitment

Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition

Read More

Centre for Appearance Research (CAR) and The VTCT Foundation Virtual Showcase 28th July 2020

Get the latest updates on the Centre for Appearance Research's work into helping people with Visible Difference

Read More

Specialist Neurofibromatosis Nurse - Wales

Find out more about our latest position available in Wales

Read More

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

Find out how you can get involved

Read More

Who is exempt from wearing a face mask? UK exemptions rules explained - and how to get a hidden disabilities exemption

Find out the up to date information on face mask rules in your area

Read More

Act it Out Prototype App Trial

If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part

Read More