The Reverse Rett podcast is back and in this episode, I’m speaking with Mathilde Mastroianni, Assistant Psychologist at the CIPP Rett Centre, South London and Maudsley NHS Foundation Trust and King’s College London.

Anyone whose child or adult with Rett has been a patient at CIPP Rett, CIPPRD or on a clinical trial at King’s over the last four years will know Tilly. During her time with the CIPP Rett team, she’s been clinical trials co-ordinator, clinical research assistant and assistant psychologist.

To families, that means Tilly has been the person they reached out to with questions, problems, reassurance and support with all manner of issues related to the clinical care and management of their family member with Rett.

In this conversation, Tilly and I talk about what got her interested in psychology in the first place and how she moved from that initial spark to the highly specialised work of the CIPP Rett Centre.

We discuss the effects of the pandemic on the work of the Centre over the last two years and the team’s extraordinary and swift pivot to telemedicine, and explore what’s behind this team’s fairly unique holistic, empowering and yet supportive approach to the clinical management of children and adults with Rett Syndrome and other rare diseases.

Please listen, share and if you have any comments, questions or ideas for new future podcast guests, please email me rachael@reverserett.org.uk

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If you are interested in registering someone with Rett Syndrome for monitoring by the CIPP Rett Centre, please email:

cpmrs@slam.nhs.uk

Reverse Rett website: https://www.reverserett.org.uk