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

Lisa helps Shine a Light on Neurofibromatosis in Belfast

Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May

Read More

Alex’s NF1 story

Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications

Read More

Sumeeth’s Schwannoma story

Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis

Read More

Laura’s NF1 story

Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1

Read More

Kian’s NF2 Blog

Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics

Read More

Disfigurement equality at work - research

This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements

Read More

RAISING THE ROOF: CHARITY COMEDY NIGHT IN AID OF NERVE TUMOURS UK

Join us in London on our first comedy night to celebrate 40 years of Nerve Tumours UK

Read More

NF1 stem cell research study

Julieta is carrying out stem cell research to understand brain development in those with NF1

Read More

Ava-Lily’s NF1 story

Ava-Lily is thriving at school despite various NF1 related difficulties - read her story

Read More