At #23OPCC we’ve just heard Gail Hilton @Child_Dementia 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👏🏻 #PedPC 👉🏻 https://t.co/IIEy98B7Zk

@ojrarediseases @ChrisSigno @LaurenKelada @imichellefarrar @kelvidge @BrittanycMcGill @UNSWObGyn_Paeds @UNSWMedicine Critical need ⭐️Coordinated family-centred psychosocial resources 🔊Childhood dementia public awareness will ⬆️early access to sustainable & integrated supports 🤝We are collaborating w/v Australia#childhooddementia families to address this need 🙌Stay tuned for more research!

@ojrarediseases @ChrisSigno @LaurenKelada @imichellefarrar @kelvidge @BrittanycMcGill @UNSWObGyn_Paeds @UNSWMedicine Findings: - 🚨Parents share overlapping challenges including physical, economic, social, emotional & psychological implications - 👍Psychosocial supports ⬆️psychological resilience - ⚡️Severe neurocognitive decline caused augmenting psychological distress & isolation

@ojrarediseases @ChrisSigno @LaurenKelada @imichellefarrar @kelvidge @BrittanycMcGill @UNSWObGyn_Paeds @UNSWMedicine 💬19 articles met review criteria, representing 1856 parents from 11 countries 👉We synthesised the data into three thematic categories: parents’ healthcare experiences, psychosocial impacts, and information and support needs.

I am breaking a little twitter hiatus with some exciting news to share 🚨The psychosocial impact of childhood dementia on children and their parents: a systematic review 🚨 has been published @ojrarediseases ! Hope you enjoy reading 👉 https://t.co/WBKGt4xq9T Key points (🧵):

Congrats to the innovation👸🏻@Eden_Robertson 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 👏🏻👏🏻

#parent & #family #mentalhealth #equitablehealthcare #paediatric #palliativecare #psychosocialsupport #clinicaltrials #community #sharedvision

Lots of fun today introducing our #worldfirst #australian led #interdisciplinary approach to tackling #childhooddementia at the #IDC2022

@RareEpilepsy @RareVoices @geneticepilepsy @kids_research @SCHNkids

#uncertainty is universal 🌏 In this 3 part series we try to #raise #awareness on how uncertainty & #hope impact families & clinicians caring for patients with #RareDisease with the aim of achieving a #paradigm of #connectivity Check our publication ⬇️ & stay tuned for part 2&3

Thank you @TorieRobinson10 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 @EpilepsySparks @CheckOrphan

@HammondCare @DementiaAus @ChildUnLTD @RareVoices @GregHuntMP

A refreshing & motivating f-2-f information session run by the #ChildhoodDementia Initiative to colletively raise awareness of the urgent need to improve #integrated healthcare & #psychosocial supports for families and children living with a #dementia https://t.co/VNPXmtIRvo

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

@suzanne_nevin speaks of the psychosocial impact of childhood dementia on children and their parents #research #psychosocial #parentsupports

You’ll be equipped with key statistics and a broad understanding of the causes, symptoms and impacts of childhood dementia. Event: Childhood Dementia: An Introduction Venue: UNSW CBD Campus, Sydney, NSW 2000 Date: Wednesday 24 August Time: 9.00 to 11.00am

📢 healthcare workers, researchers, parents & policy makers who would like to gain a better understanding of #childhood #dementias 📢 Please join us for this FREE information session event in Sydney 24th Aug! REGISTER your attendance here ➡️ https://t.co/ryzz9rsm47

Great work by @drjennydowns 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 @geneticepilepsy

#GETA2022