Beyond the Student Voice Prize
LIVE STREAMThe Student Voice Prize is delighted to invite you to our second annual virtual rare disease day event 'Beyond the Student Voice Prize;' an opportunity to connect with peers and […]
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Webinar
RSE Network Support Meeting
ONLINERett syndrome is a rare, genetic, neurological disorder affecting mainly females (1:10,000) and very few males. It is present from conception. After a period of ‘near normal’ development, the child experiences a regression in key skills, usually mobility, speech and hand use between the ages of one and two years. The child may appear very […]
Beyond the clinic: Sickle Cell Disease
The Royal Society of MedicineThis webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions, that are usually taught from […]
Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar
ONLINEPeople affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity, and at a population level, the community live with the increased psychological impact associated with the rare disease journey […]
Free
Building NHS healthcare professional awareness resources
ONLINECome along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope, Clinical Directors at NHS England, as they present the Genomics Education Programme and why it’s important. Please find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787 We would […]
Beyond the Student Voice Prize
ONLINEJoin us to celebrate the end of another highly successful Student Voice Prize. This year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success. This event is an opportunity for us to share these achievements and […]
Misdiagnosis and surgical uncertainty – A patient’s perspective
Charlotte Cuffe is a CAUK member and her patient story was recently featured in a prestigious global essay competition after she was interviewed by 5th Year Medical Student, Iman Muzafar. Join us to hear Charlotte and Iman in conversation about misdiagnosis and surgical uncertainty. To read Iman's award-winning essay published in Springer Nature go to […]