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Central Clinical School Rare Disease Day 2022 special

Hear from a group of patients, advocates, academic researchers, and clinicians who have participated in an international awareness day, Rare Disease Day 2022. Patients and advocates share their perspectives of having a rare disease and its challenges. Clinicians and researchers from the CCS talk about the hurdles of studying and diagnosing a rare disease. This video was developed through the CCS Community and Researcher Engagement program to generate awareness and illustrate the complexities behind rare diseases. In this video you can see: 0:00 Patient advocates Ken (MPN), Amanda (AE), Marcus (FA), Patricia (VSS), Nadine (PID) 3:34 Prof Andrew Perkins on Myeloproliferative Neoplasms (MPN) 4:17 Dr Mastura Monif on Autoimmune Encephalitis (AE) 4:51 Dr Ian Harding on Friedreich Ataxia (FA) 5:29 Dr Emily Edwards on Primary Immunodeficiency (PID) 6:06 Prof Meng Law & Dr Mastura Monif on brain tumour diagnosis & treatment 7:01 A/Prof Joanne Fielding on Visual Snow Syndrome (VSS) 7:32 Dr Mastura Monif on glioblastoma (an aggressive brain tumour) The big challenges 8:13 Prof Andrew Perkins - genetic testing in MPN & clinical trials 8:55 Dr Emily Edwards - development of standardised assays for PID 9:14 A/Prof Jo Fielding - funding challenges for VSS 9:45 Dr Mastura Monif - why a consortium is so important for powering up studies 10:12 Prof Meng Law - developing AI to pull together complex and different data sets Our complete playlist can be seen here:    • Rare Diseases   Website: https://www.monash.edu/medicine/ccs/c... https://www.rarediseaseday.org/countr...