(Elizabeth) Emma Palmer's Avatar

(Elizabeth) Emma Palmer

@emmagenetics.bsky.social

Working with people living with rare conditions and intellectual disability to build an equitable, respectful and effective model of care. https://research.unsw.edu.au/people/dr-elizabeth-emma-palmer www.geneequal.com www.rarediseasesnsw.org.au

155 Followers  |  109 Following  |  14 Posts  |  Joined: 28.11.2024  |  1.573

Latest posts by emmagenetics.bsky.social on Bluesky

Our inclusive research team www.GeneEQUAL.com have been nominated in category C of the consumer partnership in research awards. Would be over the moon if anyone who likes our work would vote for us. Closes midnight Sydney time accesscr-cpir.awardsplatform.com

24.07.2025 09:35 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

Thanks for sharing this story James. It's having huge impact around the world including here in Australia and very helpful in our ongoing advocacy for the need for undiagnosed disease programs helping families on the diagnostic odyssey tap into world leading research brains trusts like Nicky πŸ™

04.03.2025 11:07 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Important points Nicky/ hope you do a letter to the editors.

03.03.2025 22:28 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Very cute my 80 something mum from Leeds excitedly told me this morning about how genomics had finally gotten into the news ;) just the best story πŸ₯°

03.03.2025 09:50 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
Beautiful Charli Kamper who lives with 22q11.2 deletion syndrome with  Rick Guidotti on the channel 7 couch

Beautiful Charli Kamper who lives with 22q11.2 deletion syndrome with Rick Guidotti on the channel 7 couch

For once people with a rare disease get the platform they deserve. So grateful for Charli who has a 22q11 deletion syndrome joining Rick Guidotti from Positive Exposure on Channel 7's sunrise show to talk about a new model of rare disease health care and our events www.rarediseasesnsw.org.au

01.03.2025 23:06 β€” πŸ‘ 5    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Post image Post image

Stunning talk by @edenrobertson.bsky.social at our first #rarediseaseday conference at Sydney Children's hospital- comprehensive codesigned research with the inherited retinal disease community shaped by their priorities

28.02.2025 13:18 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Thanks so much Eden for joining us and sharing your powerful research

28.02.2025 13:14 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Lecture theatre with woman speaking at a podium at the front and a large projection screen.

Lecture theatre with woman speaking at a podium at the front and a large projection screen.

@emmagenetics.bsky.social opens the #RareDiseaseDay event, highlighting some of the common challenges faced by the 300mill ppl impacted by a rare disease worldwide. From the diagnostic odyssey, limited info, to lack of holistic care - together w/ families, we must pave the future for rare diseases.

28.02.2025 02:02 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
Street art Melbourne: the genius thing that we did was, we didn't give up

Street art Melbourne: the genius thing that we did was, we didn't give up

A/Prof Nicky Whiffin giving a fascinating speech on classification of non coding variants

A/Prof Nicky Whiffin giving a fascinating speech on classification of non coding variants

A/Prof Octavia Peck Palmer talking about all of our responsibility to bring equity to diagnoses for medically underserved populations

A/Prof Octavia Peck Palmer talking about all of our responsibility to bring equity to diagnoses for medically underserved populations

Fabulous talks today at the Royal College of Pathologist's annual conference in Naarm/Melbourne by @nickywhiffin.bsky.social and A/Prof Octavia Peck Palmer . Some fitting street art for these incredible researchers
Great to share our research www.geneequal.com and www.rarediseases.org.au

22.02.2025 10:42 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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Pixies & Similar Artists on AppleΒ Music Listen on AppleΒ Music.

music.apple.com/au/station/p...

15.02.2025 07:09 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
News & Events – Rare Diseases NSWAccessibility ToolsIncrease TextDecrease TextGrayscaleHigh ContrastNegative ContrastLight BackgroundLinks UnderlineReadable FontReset

Join us at two awesome free #rarediseaseday events on the 28th Feb and 1st March at Sydney Children's Hospital in Randwick.
Building community and connections
Register links here rarediseasesnsw.org.au/home/news-ev...
Please share with your networks!

12.02.2025 10:39 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Lisa Ewans and Emma Palmer at Australian parliament for rare disease day event

Lisa Ewans and Emma Palmer at Australian parliament for rare disease day event

Mike Freelander speaking at rare disease event

Mike Freelander speaking at rare disease event

Fiona Lawton speaking at rare disease event

Fiona Lawton speaking at rare disease event

The health minister speaking at rare disease event

The health minister speaking at rare disease event

Imagine more- the theme for this year's #rarediseaseday Honoured to represent Rare Voices Australia's medical and scientific advisory board at this year's federal parliamentary rare disease event with fellow clinicians Lisa Ewans and Prof Adam Jaffe

12.02.2025 10:34 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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December 2024 Newsletter This is "December 2024 Newsletter" by GeneEQUAL on Vimeo, the home for high quality videos and the people who love them.

2024- that's a wrap! Check out our video newsletter here from the #inclusive GeneEQUAL team vimeo.com/1040945335?s... . Wishing you all a wonderful break and huge thanks to our coresearchers, advisors, funders and community πŸŽ„πŸ™

24.12.2024 09:18 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
A doctor standing next to her brilliant poster

A doctor standing next to her brilliant poster

Very proud of our PhD student Dr Lavvina Thiyagarajan is exploring such an important topic in delving into what is known of #autistic individuals preferences and opinions about #genomic testing.. Watch this space for her systematic review ( spoiler autistic individuals have rarely been asked....)

29.11.2024 23:45 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Webinar: the power of together Hear from the GeneEQUAL team about how they work together to build more inclusive, person-centred and respectful health care and education.

The team @www.geneequal.com are stoked to be talking together at this first webinar from the National Centre of Excellence in Intellectual Disability Health nceidh.org.au/news/webinar...

28.11.2024 11:00 β€” πŸ‘ 6    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

@emmagenetics is following 20 prominent accounts