Nicole Millis

[(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

[Rare Voices Australia @RareVoices]

📢 RVA is hiring a Communications & Engagement Officer! The suitable candidate will have a range of responsibilities, including supporting RVA’s Communications Manager & other staff across a range of communications & engagement tasks. More: https://t.co/ayKa5lL9tF

#Jobs #Hiring

[Rare Voices Australia @RareVoices]

RVA has launched the ‘Rare Metabolic Disease Workforce White Paper: Towards a Strengthened Rare Disease Workforce for Australia’.

Go to RVA’s website to download the White Paper, Summary document & for background information: https://t.co/i2oKzpi6SN

#RareDiseaseDay #workforce

[Rare Voices Australia @RareVoices]

💻 Introducing RVA’s New Online Education Portal! 📱

Available 24/7, the site will contain a number of open and partner only resources that will be added to over time. The site has launched with two courses.

Learn more: https://t.co/OtGkL8ilCy

#raredisease #education

[Rare Voices Australia @RareVoices]

Exciting news in overnight! 🎉

On 16 Dec, the UN will adopt the first-ever Resolution on Addressing the Challenges of Persons Living with a #RareDisease & their Families.

RVA has received a letter confirming that Oz plans to endorse this Resolution at the UNGA 16 Dec.

[Rare Voices Australia @RareVoices]

📘Final report tabled: Parliamentary Inquiry into approval processes for new drugs & novel medical technologies in Australia. More: https://t.co/c4com1wSS7

Read RVA's initial response: https://t.co/cDAAQPa3kQ

Full RVA statement to come shortly.

#raredisease #policy #advocacy

[Nicole Millis @millisnicole1]

Congratulations to the organisers of #ICIEM2021. Thank you for inviting @RareVoices to participate. I was so pleased to be a plenary speaker on ‘Patient advocacy in guiding policy development for metabolic disorders’ and enjoyed the Q&A

[Nicole Millis @millisnicole1]

Very humbled and pleased to be a plenary speaker today - ‘Patient advocacy in guiding policy development for metabolic disorders’ #ICIEM2021 Looking forward to Q&A tomorrow.

[Rare Voices Australia @RareVoices]

📌 Update: Parliamentary Inquiry into approval processes for new drugs & novel medical technologies in Aus📌

The Standing Committee on Health, Aged Care & Sport intend to table their report this Thurs 25 Nov between 10–11am AEDT in Parliament.

More: https://t.co/nf3SIX7dU0

[Nicole Millis @millisnicole1]

Virtually attending #ICIEM2021 Interesting first day. And to my surprise a shout out from Minister Hunt in his opening address!