🎉Congrats to the 2024 winners of our SHP Annual Early Career Research Awards! 👏
🏆Dr Alyssa Milton
🏆Dr Nicole Scholes-Robertson
🏆Clin. A/Prof. Mark Dennis
🏆Dr Audrey P. Wang
🏆Dr Danielle Muscat
🏆Dr Emma Charters
🏆Dr Alan Ma
Read more: https://t.co/995cY1Dnh8
#shpforum
The power of diversity! https://t.co/5ybZyoZccP
New editorial celebrating global rare achievements on #RareDiseaseDay2024 Huge congratulations to Wendy in leading a great new journal with the voice of those living with rare diseases at its core. @RareVoices @rarediseasesint
Today on #RareDiseaseDay, the #RArEST Project has released new national recommendations to help health professionals provide high quality care to people living with a #raredisease, their families & carers.
Read more: https://t.co/B7ft8hO8ye
#RareDiseaseDay2024
Honouring Rareness: Celebrating Rare Disease Day 2024! 🦢🎉
On this exceptional leap year day, we celebrate the rareness of our SWAN families. Each one is a testament to courage, resilience, and unwavering strength in the face of unique challenges.
Already #RareDiseaseDay2024 in Aus & so pleased to share with you our first-ever National Recommendations for Rare Disease Care https://t.co/D0Z6goXDfQ Huge thanks to the RArEST team, @RareVoices ,our clinical working group and people living with rare who codesigned these!
We are delighted to announce the launch of the Rare Therapies Launch Pad, a new programme that aims to develop a pathway for children with rare conditions to access therapies made specifically for them. Read more here: https://t.co/zorgjALaEr
Today, Genetic Counsellors, politicians and patient advocates from around the country gathered at Parliament House in Canberra to recognise and champion the important work we do for patients and families impacted by genetic conditions.
This year the HGSA updated the definition of a genetic counsellor to help better recognise the work we do. Let's break down the definition into four key pieces:
https://t.co/4B9KaD6qHW
#ASGC#GeneticCounselling
A fantastic opportunity to hear about #gemomics#education potential from one of the leaders in this field — looking forward to hearing @GemmaChand talk again
We're eagerly anticipating #CanForum23 next month, where @profdmthomas will be part of an incredible lineup discussing Australia's readiness for the genomic revolution in cancer. Secure your spot: https://t.co/hXtdpRCH0b #Genomics
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 (🧵):
R U OK?Day 2023 is Thursday 14 September and is our national day of action when we remind Australians that every day is the day to ask, ‘are you OK?’ and start a meaningful conversation whenever they spot the signs that someone they care about might be struggling with life.
This wonderful study is seeking students with intellectual disability to provide insights into #learning about #science#genetics and #health. Do you know anyone who might be interested? Please do see the information attached to @GeneEQUAL’s post ⬇️⬇️⬇️
Today is R U OK Day!
Whether its on your way to work or school, make a meaningful moment to ask "R U OK?'
Let's start having more of these conversations. You do not have to fight your battles alone.
#ruok#ok#okay#mentalhealth#health#swan#parents#disability#rare
We are at a historical junction when it comes to future-proofing our HTA. The gap between TGA and PBS in Australia is leaving patients without options.
The HTA Review is our opportunity to ensure that this changes, by overhauling our current systems to ensure that they can keep up with the pace of healthcare advances and provide equitable, affordable access.
#PersonalisedMedicine is the future – a #StrongerPBS and access to clinical trials with innovative medicines are key to delivering this for Australians.
#PharmAus #PharmAus23
This week, @joshburnsmp introduced a motion calling for policy change against genetic discrimination in life insurance.
Read our Conversation article about it here: https://t.co/FnRzIHYgAh
You can ask your MP to support this change using our simple tool: https://t.co/m1XS89NHRA