For most of us living with Rett Syndrome, Rett Syndrome awareness month conjours images of purple pumpkins and painted nails, along with vibrant social media posts telling people that Rett Syndrome exists and they should know what it is and what it does.
This year at Reverse Rett, we’re also asking you to get behind our campaign to spot the signs, test and register all UK children and adults with Rett Syndrome, as a critical part of our long term strategy to ensure that when the time comes, everyone with Rett Syndrome in the UK has access to emerging treatments that could change their lives.
Here are some of the activities which we’ve put in place for you to share with your networks and friends.
Spot the signs We’re sending a targeted mailout and spot the signs leaflet to 650 MPs during October in partnership with CoreMarketing. The email calls for each MP to share the leaflet with their GPs, hospitals, sports centres and meeting places If you have a direct connection to your own MP or would like to write to them in support of this campaign.
Test We’re highlighting issues around genetic testing in Rett Syndrome and the critical need for earlier and more effective diagnostic tools through Reverse Rett participation in the Cambridge Rare Disease Network Rare Summit 2021 on October 7th, where our poster and video presentation about Rett Syndrome will be on display.
Register To attract more UK clinical trials and to gather the information we need to drive treatments for Rett Syndrome through our regulators, we need everyone with Rett Syndrome in the UK to be registered on the Rett Registry UK.
Find social media assets to share here:
The new app version of the Rett Registry UK will launch later this month, watch this space.
October Rett Connect Sessions:
Fri, 1 Oct 2021 14:00 BST
Mon, 4 Oct 2021 11:00 BST
Wed, 13 Oct 2021 20:00 BST
And finally, our fundraising campaign: Do One Thing
We’re asking everyone who cares about someone with Rett Syndrome to do one thing, anything, for Rett Syndrome Awareness month. Something that raises money is fantastic, something that gets people talking about why Rett Syndrome awareness is important is brilliant, something that does both is best. At the end of the month, we’ll send you a certificate and pin as a thank you for taking part.
Please share and register HERE