UKRET Members Area

Here are updates on our latest activities…

UKRET meeting

Next quarterly call: Tuesday, 7th November 2023 12:30-1:30PM

Join Zoom Meeting
Meeting ID: 812 7391 5316
Passcode: 925089

UKRET call 20230801

Last quarterly call: Tuesday, 1st August 2023 12:30-1:30PM

Watch the recording of our last call here (click on the title above to launch the video from YouTube).

BINGO Project

Jessica Martin PhD Student (Genomic Disorders and Cognitive Development Group) at the University of Cambridge, has contacted us recently to inform us of the BINGO project and how we can all help to communicate this to our member families. The project is focused on understanding learning and mental health across conditions, which is less high profile and exciting than treatment-focused research, but may connect to people’s everyday experiences and concerns.  Jessica has agreed to join us on our next quarterly call to give us an overview and how we can get families involved.

Rare Diseases and Climate Change event - 13th July, Chalfont

SAVE THE DATE...more information on the attached flyer here. Information on a previous event here.

Genomics England Epilepsy Roundtable - Aug/Sept 023

Coming soon...an event involving a variety of stakeholders to discuss 'the epilepsies', what is happening in the UK, what are the needs and what collectively can we do to make change happen. More details to follow...

Rare Epilepsies Conditions Insight Report

The latest response Daniel has had from IAS on the condition insight report is: “I have just received an update from the IAS training department that they are currently working on updating the condition insight report as I forwarded them a few stakeholder inputs. This is due to be reviewed by IAS comms team and should be updated over the next couple of weeks.” Daniel is due to speak to Chris soon so will ask for another update.

Rare-X patient registries

Laura Hattersley from CASK Research offered to speak at a future meeting about Rare-X for anyone who’s interested in learning more about their registry offering from another charity’s experience. We could do this as an ad hoc session as opposed to a qtrly meeting?