28 Feb 2023
🦓 #ShowYourStripes, it’s #RareDiseaseDay! 🥳
#RareInTimesSquare is featuring portraits of kids with #RareDiseases
Can't make it to NYC? Celebrate by listening to one of our 40 #raredisorder episodes of DNA Today!🎙
👉 DNAtoday.com 👈
#reframerare #careforrare
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23 Feb 2023
In the first few days of life,
We want to make sure you thrive
With proper care, you can live a healthy life, Without any added stress or strife
Newborn screening, a simple test,
To ensure your health is at its best
#AKUPathology
@AKUGlobal
#REFRAMERARE
#rarediseaseday2023
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1 Mar 2022
🦓 #ShowYourStripes, its #RareDiseaseDay 🎉
👫#Rarediseases affect 25-30 million Americans, while individually rare, collectively quite common!
👇We #reframerare in 30 episodes of the #podcast👇
dnapodcast.com/episodes/cate…
#sciencepodcast #podcasts
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#ICYMI earlier this year, we celebrated #RareDiseaseDay at Insmed! We were so inspired by our employees’ commitment to #ReframeRare. How are you supporting the #raredisease community?
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16 May 2020
Today is #HAEDay :-) and we want to say thank you to everyone who is helping drive awareness, answers and action for #HereditaryAngioedema. We highlighted some of these Rare Stars in honour of #RareDiseaseDay. See how they are helping #ReframeRare here bit.ly/2WzQR5S
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#ICYMI - Inspired by #RareDiseaseDay, our team shared how they are working to #ReframeRare. Hear from Mariam on how her work is having a positive impact on the #raredisease community.
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16 Mar 2020
Rebecca spent 10 years desperately searching for a diagnosis for her daughter Ruby's rare condition. It wasn’t until Ruby's DNA was sent off for testing in 2019, that she finally received an accurate diagnosis of PCH6.
#ColourYourHairForRare #reframerare @swanaus
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13 Mar 2020
Did you know up to 70% of people living with a rare disease report not having their health and disability care needs met?
#SCN2A #ColourYourHairForRare #reframerare @swanaus
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9 Mar 2020
Shannae is living with MPS1, and doesn't let it stop her doing what she loves. She wants Australia to know that people living with a rare disease are people "just like you"
#ColourYourHairForRare #reframerare @swanaus
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6 Mar 2020
Thank you for the opportunity to talk all things SCN2A and your support of rare diseases.
#scn2a #raredisease #curescn2a #rdd2020 #raiseawareness #epilepsy #autism #support #advocacy #reframerare
6 Mar 2020
Read the round-up of our #patientperspective talks for #RareDiseaseDay this year, here: pharmagenesis.com/news-and-v…
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6 Mar 2020
This Rare Disease Day we partnered with @swanaus to bring awareness to the unique needs of the rare disease community. Hear what some of our amazing rare disease families had to say:
#reframerare #rareisproud #rareisloud
vimeo.com/395872971
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5 Mar 2020
We have done a deep dive on Rachel’s remarkable story to look at the incredible impact she’s had on the #RareDisease community. Read the article here: takeda.com/what-we-do/resear… #RareDiseaseDay #ReframeRare
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5 Mar 2020
Celebrating #RareDiseaseDay (29 Feb) tonight with patients, families, friends & stakeholders in the Australian rare disease community... #ReframeRARE #RareIsMany #RareIsStrong #RareIsProud
@RareVoices @swanaus @GeneticAll_AU @SanofiGenzyme
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5 Mar 2020
"Receiving a diagnosis can link patients, their families and carers with other similarly affected families, provide a sense of community, and importantly, help them navigate support systems.
#ColourYourHairForRare #reframerare @GeneticAll_AU"
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5 Mar 2020
Receiving a diagnosis can link patients, their families and carers with other similarly affected families, provide a sense of community, and importantly, help them navigate support systems
#ColourYourHairForRare #reframerare @swanaus
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5 Mar 2020
Rare Star Rachel Callandar is an Australian speaker, author, trainer and advocate who empowers people living and working with rare conditions. #ReframeRare
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3 Mar 2020
Will and Kris advocating for Rare Disease Awareness.
Thanks to @swanaus and @GeneticAll_AU for this campaign to improve services for rare families.
#reframerare #raredisease #SCN2A
3 Mar 2020
Meet mum, Kris, and her son, Will, who is living with a rare genetic condition known as SCN2A, who are raising awareness of the need for improved access to genetic services, funding and treatments for rare disease families
@GeneticAll_AU #ColourYourHairForRare #reframerare
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3 Mar 2020
3 Mar 2020
Meet mum, Kris, and her son, Will, who is living with a rare genetic condition known as SCN2A, who are raising awareness of the need for improved access to genetic services, funding and treatments for rare disease families
@GeneticAll_AU #ColourYourHairForRare #reframerare
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3 Mar 2020
Meet mum, Kris, and her son, Will, who is living with a rare genetic condition known as SCN2A, who are raising awareness of the need for improved access to genetic services, funding and treatments for rare disease families
@GeneticAll_AU #ColourYourHairForRare #reframerare
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3 Mar 2020
Meet mum, Kris, and her son, Will, who is living with a rare genetic condition known as SCN2A, who are raising awareness of the need for improved access to genetic services, funding and treatments for rare disease families @swanaus #ColourYourHairForRare #reframerare
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