Young People’s Genomics Café
LIVE STREAMAre you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition? Chromosomes! Dr Andrew Fry, Clinical Senior Lecturer in […]
Loading view.
Webinar
Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day
ONLINEJoin us for this ONLINE event on Rare Disease Day 2023, find out about how rare genetic conditions, like SRS, are diagnosed and hear about what it’s like to live with Silver-Russell syndrome (SRS). Featuring Gracie Taylor, Patient Voice (& Science Insights Alumni) Prof Mary Porteous, SE Scotland Rare Disease Diagnostic Service Dr Emma Wakeling, Clinical Genetics and Genomics Consultant, Great […]
Conducting rare disease research in the context of clinical care
ONLINE11.00 am Introduction and welcome Tony Lockett (CPMR London) 11.05 am Dr Lucy McKay (Medics for rare diseases)- Can Medical Education Help in the Conduct of Research in Rare Diseases? 11.30 am Dr Robin Lachman (University College London) – Does Evidence-based Medicine Work for Rare Diseases? 12.00 pm Fleur Chandler (Sanofi) Putting it into perspective, […]
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 […]
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 […]
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 […]
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 […]
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. […]