Great work by Jenny Downs from telethonkids outlining development of outcome measures for clinical trials in DEEs and #GeneticEpilepsy. The same principles apply across a range of disease states to ensure patient relevant outcomes are part of clinical trials. #GETA2022

Exciting research connecting international #raredisease #advocacy bodies to tackle the development of valid HRQOL outcome measure for #DEE patients entering #clinicaltrials 🎯📈 #GETA2022 GETA

Suzanne Nevin, PhD speaks of the psychosocial impact of childhood dementia on children and their parents #research #psychosocial #parentsupports

Three areas in which parents need more support in regards to childhood dementia: diagnostic odyssey, transition periods and advanced stages of the condition #childhooddementia #psychosocialsupport Suzanne Nevin, PhD

Thank you Torie Robinson 🇺🇦 for increasing awareness about #epilepsy and all the cool epilepsy research that is being done in the 🌎. Give her a follow-up if you haven't already #genetics #precisionMedicine Epilepsy Sparks Rare Diseases

Congrats to the innovation👸🏻Eden Robertson, PhD on publishing a component of her #genecompass project which responds to the needs of families of children with #genetic #epilepsy delivering #understandable #clinician-approved #information 👏🏻👏🏻

What a privilege, hearing Clarissa Schilstra, PhD give one of her first presentations as a #postdoc. Congrats #Doctor👩‍🎓 ‘Assessing & addressing social well-being in adolescents & young adults with #cancer’ #behaviouralsciencesunit #kidscancercentre #aya #randwickresearchseminarseries

At #23OPCC we’ve just heard Gail Hilton Childhood Dementia Initiative present on the challenges of families living with childhood dementia - AND the transformative role palliative care can play across the illness trajectory 🙌🏻 Important paper Suzanne Nevin, PhD👏🏻 #PedPC 👉🏻rdcu.be/dlBNp