Top Tweets for #ReframeRare
π¦ #ShowYourStripes, itβs #RareDiseaseDay! π₯³
#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!π
π https://t.co/6Tkd0w86q1 π
#reframerare #careforrare
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
π¦ #ShowYourStripes, its #RareDiseaseDay π
π«#Rarediseases affect 25-30 million Americans, while individually rare, collectively quite common!
πWe #reframerare in 30+ episodes of the #podcastπ
https://t.co/AX4VL8qpmz
#sciencepodcast #podcasts
#ICYMI earlier this year, we celebrated #RareDiseaseDay at Insmed! We were so inspired by our employeesβ commitment to #ReframeRare. How are you supporting the #raredisease community?
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 https://t.co/VrEttR4QOh
#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.
Rebecca spent 10 years desperately searching for a diagnosis for her daughter Ruby's rare condition. It wasnβt until Ruby's DNA was sent off for testing in 2019, that she finally received an accurate diagnosis of PCH6.
#ColourYourHairForRare #reframerare @swanaus
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
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
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
Read the round-up of our #patientperspective talks for #RareDiseaseDay this year, here: https://t.co/tH1cF03e6e
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
https://t.co/AEg5fQ14qp
We have done a deep dive on Rachelβs remarkable story to look at the incredible impact sheβs had on the #RareDisease community. Read the article here: https://t.co/MXLdZqsbYC #RareDiseaseDay #ReframeRare
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
"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"
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
Rare Star Rachel Callandar is an Australian speaker, author, trainer and advocate who empowers people living and working with rare conditions. #ReframeRare
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
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
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
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
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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