RARE Portal is now over a year old! Thank you to everyone who has contributed to RVA's multi-stakeholder consultation process.

We encourage you to visit rareportal.org.au.

Launched: Lyfe Languages Universal Medical Translator - translates medical terminologies into Indigenous languages. The web application features a rare disease module created as part of RArEST Project.

Visit lyfelanguages.com or web application via app.lyfelanguages.com

In this systematic review, Manjekah, (Elizabeth) Emma Palmer (she / her) & colleagues highlight multiple contributors to poor consent practices for people with intellectual disability, providing recommendations to enable more equitable & accessible care.
bit.ly/4cKIGZw

Calling all genetic 🧬 epilepsy 🧠 friends! Check out this upcoming hybrid meeting hosted by NINDS/NIH next month. Focus is on strategies for genetic therapies. Join us!

event.roseliassociates.com/ninds-genetic-…

Have you visited our website, seen our #EasyRead resources or watched our Best Practice videos? Join the rest of the 🌍 checking out our #Toolkit for health care professionals: geneequal.com/genetic-resour… Australasian Society of Genetic Counsellors (ASGC) Royal Australasian College of Physicians NSW Health Centre for Genetics Education, HETI NSW Health NHMRC Australian Genomics

This resource assists those working with the rare disease community with providing Mental Health First Aid (MHFA). Developed in consultation with people living with a rare disease, this course complements MHFA training.

Access the course: education.rarevoices.org.au

🎉 Exciting news! Congratulations to Dr. Yann Herault & Dr. Tania Sorg, Dr. Michael Pusch, & Dr. Raul Guzman, recipients of the Cure CLCN4 Pilot Grant! Learn more about their projects on CLCN4-related condition: cureclcn4.org/grant-awardees…. Thanks to all who applied! 🙏 #cureclcn4

We are looking for a digital education and e-learning expert to lead key education projects, including an accessible knowledge exchange hub for people with intellectual disability, healthcare and disability professionals. Find out more at external-careers.jobs.unsw.edu.au/cw/en/job/5244…

The RArEST Project was funded by the Australian Government to develop and deliver #RareDisease awareness resources, education, support and training. 🌟We will be sharing a selection of the initiative’s deliverables to date in the coming weeks.

Read more: rarevoices.org.au/rarest-project/

'Digital Mental Health Resources Fact Sheet' tailored for Australians living with rare diseases, their families, and caregivers. You can find credible information about digital mental health and services.

Download now: rarevoices.org.au/rarest-project/

We are talking with parents & carers of young people with intellectual disability about their child’s experiences of #health & #genetics at high school. See our website for more information about this important study: geneequal.com/current-news/n… Self Advocacy Sydney Inc (SAS) Australian Genomics There's still time to register for RACP Congress

Are you a person with intellectual disability? Join our focus group and tell us about how you want to teach health students about intellectual disability. Information is in Easy Read. 3dn.unsw.edu.au/projects/resou… CID Inclusion Australia NSW Health CDS Down Syndrome Aus

Want to know more about #Reproductivecarrierscreening ? Resources to support health professionals and their patients understand reproductive carrier screening can be found at the Centre for Genetics Education genetics.edu.au/SitePages/Repr… RACGP ACRRM NSW Health RANZCOG - O&G Australasian Society of Genetic Counsellors (ASGC)

It’s the GETA 🧬🧠 conference 2024 - which not solely a hub for groundbreaking scientific presentations (re genetic epilepsies) but also a vital support network for families!

Featuring Prof Ingrid Scheffer -
Chair of Paediatric Neurology at University of Melbourne & Senior Principal Research

Assume That I Can … I’m pledging as a healthcare worker to leave any negative assumptions at the clinic door. I’m so grateful to be part of ⁦GeneEQUAL and constantly challenging what I was taught at medical school. #Respect #Equity youtube.com/watch?v=Tf8j6s…

Assume that I can... it is that easy youtube.com/watch?v=Tf8j6s…

Self Advocacy Sydney Inc (SAS) CID Down Syndrome Aus UNSW Disability Innovation Institute Jan Walmsley GeneEQUAL IDRS Inc. Family Planning Australia Liz Tilley UNSW Arts, Design & Architecture UNSW Medicine & Health UNSW Gonski Institute for Education Melanie Nind Laurel Mimmo PhD Deborah Bateson

GeneEQUAL presented at the Future Health Expo at UNSW This event showcased the UNSW research revolutionising #healthcare & medical science. Find out more here: innovationcommunity.unsw.edu.au/futures-expo-s… (Elizabeth) Emma Palmer (she / her) Iva Strnadova RACGP NSW Health UNSW Disability Innovation Institute UNSWMedicine

A nice surprise to start my Friday! Seeing the Rare Voices Australia Rare Helpline available to support individuals with rare disease navigate their journey makes me feel hopeful & proud to contribute learnings in this field. 📝 @
doi.org/10.1016/j.ejpn…

UNSW Medicine & Health (Elizabeth) Emma Palmer (she / her)

RVA Partner, Childhood Dementia Initiative is hiring for an Education Lead. The role will be responsible for all aspects of CDI's education and awareness projects. Applications close on Friday, 22 March at 10am AEDT.

To apply, visit lnkd.in/gnEWVbqJ

Consultation is open on the consumer-led co-design of an Enhanced Consumer Engagement Process for health technology assessment (HTA).

You can provide feedback on the proposed recommendation here: health.gov.au/co-design-hta