Living with Rett Syndrome at any time is challenging.
Coronavirus is making life much more difficult for people with Rett Syndrome and those caring for them.
During the pandemic, we’re working hard to provide information and resources, including practical tips for families and carers supporting someone with Rett Syndrome, either in the same household or from a distance.
We cannot offer personalised medical advice but we can help you understand broader medical recommendations from our medical advisors and direct you to other reliable sources of information on managing things at home during this difficult situation.
Although Reverse Rett is not a family support organisation, we are here for you during this crisis. You can call us on 0161 413 0585, email us firstname.lastname@example.org or message us through the Reverse Rett Facebook page.
If you’d like to connect with other research-focused families to find out how other like-minded people are getting through the crisis and to keep updated on the latest relevant research publications and resources, join the Reverse Rett Facebook Community here.
You can also see the full range of free resources, frequently asked questions (FAQs) and statements we have published since the outbreak started here. You can ask your own FAQ for us to answer on the same page.
Other useful organisations and information:
Contact – charity offering information and advice for families of disabled children with resources on benefits, education and coping during the Coronavirus crisis. https://contact.org.uk/advice-and-support/coronavirus-information-for-families-with-disabled-children/
MIND – charity offering information and advice on mental health. https://www.mind.org.uk/information-support/coronavirus-and-your-wellbeing/
Northern Ireland https://www.publichealth.hscni.net/news/covid-19-coronavirus
Public Health England – guidance from the government on the Coronavirus crisis and what people need to do. https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance
Rett UK – Charity offering support to UK families of people with Rett Syndrome helpline 01582 798 911 https://www.rettuk.org/covid19/
Rett University – Free online learning resources https://rettuniversity.org/free-home-learning-resources/
Universal Credit Government pages – Information on benefits and Coronavirus https://www.understandinguniversalcredit.gov.uk/coronavirus/