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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

None of the Covid-19 vaccines which are already approved in the U.K. have been approved for use in children yet. Until the MHRA approves a vaccine for children, most children under 16 will not be able to receive the vaccine.

Some exceptions have been made for children age 12-16 who meet all of the following criteria:

  • Over 12 years old
  • Spend regular time in a specialised residential care settings for children with complex needs
  • Tend to get recurrent respiratory tract infections
  • Have a serious neuro-disability (this would include Rett Syndrome)

Children under 12:

The JCVI says that “Recommendations on vaccinating children with other underlying conditions will be reviewed after the initial roll-out phase by which time additional data on use of the vaccines in adults should allow a better assessment of risks and benefits.(P.13, chapter 14a, Covid: Green Book)

Once there are more safety data on Covid vaccines for children under 12 and on the vaccine roll-out across the population in general, the MHRA will review risks and benefits of vaccinating children. They are likely to consider reviewing vaccinating CEV children first.

If you think your child is clinically extremely vulnerable or you aren’t sure, check out this letter from the Centre for Personalised Medicine in Rett Syndrome which could help you and your GP or paediatrician in reviewing your child’s CEV status.

You can see the full priority list (page 8) and more detailed information about the UK vaccine program here.

Questions? Contact rachael@reverserett.org.uk

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

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