COVID-19 and Rett

The coronavirus (COVID-19) outbreak continues to be a time of great difficulty for everyone, especially if you are caring for a child or adult with Rett Syndrome.

We continue to be in close contact with Professor Santosh and team at the Centre for Personalised Medicine and other UK Rett clinicians and will continue to work to bring you the latest information on COVID-19 and Rett.

On this page you will find news articles, updates and resources relating to Covid 19 and people with Rett Syndrome.

If you have a query which has not been addressed, you can submit a question via the form at the bottom of the page. We will endeavour to answer you as quickly as possible.

COVID-19 & Rett FAQ

Update 07.01.2021

We do not have enough information or experience of Covid 19 in people with Rett syndrome yet, to be able to say for certain who exactly is at high risk of complications from Covid 19.

People with Rett Syndrome are at increased risk of respiratory infections and cardio-respiratory compromise in general.

The Centre for Personalised Medicine in Rett syndrome (CPMRS) has issued recommendations re the consideration of Clinically Extremely Vulnerable status in children and adults with Rett syndrome which may be useful.

Help arranging collection/delivery of essential supplies:

In many local areas, informal groups of volunteers are still helping vulnerable individuals and families. You can find these by searching *name of town/village covid 19 support on Facebook or on search engines. If you need help with finding a local group to support you, email us and we will do what we can to help.

Be aware that these are informal groups and although some have background check requirements and processes for managing money etc whilst helping self-isolating households, some will not, so care is needed in making arrangements for assistance. 

NHS Volunteer Responders are also still available for help with getting shopping and essential supplies. You can choose what products you want and when you want them, and an NHS Volunteer Responder will then pick up and deliver your shopping to you. They can also pick up prescriptions or any other essentials you need. Call 0808 196 3646 (8am to 8pm) to arrange volunteer support.

If there’s a local lockdown or you need urgent help and have no other means of support, contact your local authority to find out what support services are available in your area.

For further information about how to get food and other essential supplies, please see the guidance on accessing food and essential supplies.


For more information and any advice, please don’t hesitate to get in touch.

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