RArEST ProjectECHO

A real-time case-based community of rare disease practice (#ProjectECHO) for Australian health professionals

[Rare Voices Australia @RareVoices]

Rare Disease Day-themed free event for people living with a rare disease and their families on Saturday, 1 March at the Sydney Children's Hospital.🎉👨‍👩‍👦

Learn more and register: https://t.co/hhxsQu8SPl

[Rare Voices Australia @RareVoices]

Sydney Children's Hospital is hosting a clinical education day to celebrate Rare Disease Day on 28 February at Sydney's Children Hospital. The event is for health professionals who have an interest in rare disease.

Register: https://t.co/qmUBQVgYac

[RArEST ProjectECHO @RArESTECHO]

Join a special, family-friendly #RareDiseaseDay event to connect with other people living with a rare disease, researchers and clinicians https://t.co/yPbcpfTkmb @UNSW @vcfs22q11 @GeneticAll_AU @PositiveExpo

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

A really interesting talk from @GemmaChand at #ICG2023 highlighting advances in genomic education to support safe mainstreaming including one of my personal favourite approaches - communities of clinical learning practice - like our Rare ECHO https://t.co/yo4ANnySYO @RArESTECHO

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

Wow this looks fabulous! @RareVoices @RArESTECHO @imichellefarrar

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

With 95% of #RareDisease having no approved treatments it is critical to know how to embed clinical research safely into our health care practice. Hearing fromthe incredible Dr Falak Helwani from @RareVoices learn more about our Rare @RArESTECHO sessions https://t.co/yo4ANnySYO

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

We are excited to launch another round of interactive educational sessions to share knowledge and partner with #raredisease patient groups. Lets reduce low-value healthcare and promote equitable person-centred high-quality #rarecare @UNSWMedicine @RandwickHealth @AusGenomics

[Silvana Techera @silvanatechera7]

Just 1 more sleep to go...Join our #Transition Care Network webinar series to hear from Dr Elizabeth Emma Palmer on the #Transition for young people with a #raredisease. Tomorrow Wednesday 12th July, 12:30-1:30pm. To register please visit: https://t.co/ycX2LLqjbi

[RArEST ProjectECHO @RArESTECHO]

Did you know GPs see about 70 people living with a rare disease in their practice? Join our next round of Rare Disease ECHO sessions to learn how to care for these patients: https://t.co/erJaOBfvdw @emmagenetics @LaurenMcKn1ght @RareVoices @ProjectECHO

[RArEST ProjectECHO @RArESTECHO]

Fantastic news, we're running another round of #raredisease webinars 🥳 New topics, improved format, same great community building!
https://t.co/x0f28U4eJ5

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

We are hiring! Passionate about #RareDisease ? Program manager skills? Check out this position and feel free to reach out to me with any questions
@RareVoices @RArESTECHO @HGSAAustralasia @AusGenomics @UNSWMedicine 🔽🔽

https://t.co/OEHYcRbArR

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

For all those interested in #rare and #undiagnosed diseases the undiagnosed disease day global webinar can be watched here https://t.co/Wev8gv1Dv0 A huge thank you to the @WilhelmFound for organising and especially to all the brave patients and families who spoke

[Rare Voices Australia @RareVoices]

Researchers from the University of Queensland are seeking participants to complete an online survey about their views on genomic technologies & their impact on people with disability: https://t.co/vEms7nyqa3

#Research

[Medicine Today @MedTodayJournal]

Advances in rare disease genomics can significantly help GPs access diagnoses. Ongoing developments in research and advanced therapeutics continue to provide hope for patients. Read more... https://t.co/hk9NyTYnne

@YvonneZurynski @RareVoices @emmagenetics @imichellefarrar

[(Elizabeth) Emma Palmer (she / her) @emmagenetics]

Interested in culturally appropriate whole of life care for #raredisease? Our @RArESTECHO next interactive webinar for health professionals is happening tomorrow! Join for free: https://t.co/40vVI1gLut

[RArEST ProjectECHO @RArESTECHO]

Don't forget to join our webinar on whole of life care in #raredisease tomorrow! Register here: https://t.co/5tLj6u9iAg @RachaelHavrlant @nswaci @silvanatechera7 @telethonkids

[Rare Voices Australia @RareVoices]

𝗥𝗮𝗿𝗲 𝗩𝗼𝗶𝗰𝗲𝘀 𝗔𝘂𝘀𝘁𝗿𝗮𝗹𝗶𝗮’𝘀 (𝗥𝗩𝗔) 𝗢𝗻𝗹𝗶𝗻𝗲 𝗘𝗱𝘂𝗰𝗮𝘁𝗶𝗼𝗻 𝗣𝗼𝗿𝘁𝗮𝗹 complements the workshops, webinars & customised mentoring support provided to RVA Partner organisations through our Education Program. More: https://t.co/CSDDliROJi

#RareDisease

[MedicsforRareDisease @MedicsForRare]

Join @genomicsedu on 20 April for their next #LinkageExpertWebinar hosted by Dr Hassan Shakeel. In this broadcast, Hassan will describe his work repurposing drugs for rare disease: https://t.co/xMlLALmSLb

[RArEST ProjectECHO @RArESTECHO]

@RachaelHavrlant @nswaci @silvanatechera7 We're excited to have presenters from opposite sides of Australia chatting about how to provide great care. All health professionals are welcome to join😃

[RArEST ProjectECHO @RArESTECHO]

We will also have an engaging case study presented by @silvanatechera7, #Transition Care Coordinator @nswaci about moving from paediatric to adult care

[RArEST ProjectECHO @RArESTECHO]

Join us on 19 April to hear from Danielle Headland about #CulturalSafety in #raredisease! Danielle is a Whadjuk Yued woman from the Noongar Nation, Champion at Lyfe Languages and Aboriginal Research Officer @telethonkids. Register here: https://t.co/5tLj6u9iAg