Top Tweets for #RareVoice
ఉపాధ్యాయుల గొప్పతనంపై డాక్టర్ సర్వేపల్లి రాధాకృష్ణన్ మాటల్లో 🎙️
#DrSarvepalliRadhakrishnan | #TeachersDay | #RareVoice | #speechless
Source: Prasar Bharati Archives
発声障害闘病記録 その4「声のリラックス」［RareVoice Diary vol.4] #RareVoice #発声障害 #せなすけ https://t.co/gNtqvte83x @YouTubeより
この呼吸方法、本当にリラックス出来ます。
是非皆さん、お試しアレ！
#せなすけ
#RAREstudies #RAREDisease #RAREAdverseEvents #RARECancer #RAREVoice
Join the #Living😏 #RARE study & #RARE drug development needs YOU 🫵
Why is #Rare no longer #Rare? #mRNA?
Think on people 🙏 #VaccineInjury renamed #RareDisease
https://t.co/JJruSbOrVl
Tomorrow is #RareDiseaseDay, a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. With more than 10,000 rare conditions, everyone likely knows someone impacted by a rare disease. #RareVoice #PatientVoice #Advocacy #Awareness
#Alaskan advocate and #RareArtist Sarah Bailey presents @lisamurkowski with the Senator’s #RareVoice award for #advocacy. The award is a painting that Sarah created to map her journey with #UsherSyndrome. #RareDC2023 @AdamsTEAM
Hello peeps,
Subscribe this channel to be aware of some social issues, taboos etc you don't like to talk about....
👉https://t.co/COnfkJxUGo
#RareVoice
RareVoice Awards- This year marks the 11th annual RareVoice Awards, hosted by the EveryLife Foundation's RDLA. This celebration honors advocates who champion and amplify the rare disease patient voice in state and federal policy. @EveryLifeOrg @RareAdvocates @PPALSorg #rarevoice
EveryLife Foundation’s 11th annual RareVoice Awards, hosted by RDLA
Dec 14, Washington, D.C.
This celebration honors advocates who champion/amplify the rare disease patient voice in policy
Click below to register:
https://t.co/dmCx4G65l3
@MPSSociety @EveryLifeOrg #RareVoice
We would really encourage as many of our #rarefamilies to participate in this survey which will shape a new family information service. What kind of information would you like to see available if your child is an inpatient, clinic app, A&E etc. #rarevoice #makingirelandrareaware
We are developing an exciting new information service to support families with children in hospital. If you are a parent/carer with experience of having a child in hospital, please complete this short survey - https://t.co/locqSBzWK6
#childreninhospital #survey #familyadvocates
Calling the many rare families who’s children have had hospital visits, this is a survey & service that may interest you
What was your experiences of A&E, inpatient & outpatient visits, clinic visits, day surgeries etc.
This is a short survey from @childreninhosp
#rarevoice
We are developing an exciting new information service to support families with children in hospital. If you are a parent/carer with experience of having a child in hospital, please complete this short survey - https://t.co/locqSBzWK6
This year marks the 11th annual #RareVoice Awards, hosted by the @EveryLifeOrg's Rare Disease Legislative Advocates (RDLA). This celebration honors advocates who give #RareDisease patients a voice in state & federal policy. Nominate today! #RareVoiceAwards https://t.co/nSVZX9A16F
Powerful perspective from my bestie from the westie #rarevoice #patientvoice #patientadvocacy #healthcare #patientexperience #digitalhealth
.@wegohealth @HealthUnion #Podcaster of the Year Effie Parks @OnceUponAGene shares her unique and highly personal perspective on the power of #healthcarejournalism to change lives, including her own. #powerpress #powerpress22 #healthcare #journalism #raredisease #CTNNB1
The 10th Anniversary of the RareVoice awards will take place virtually on December 15th, 2021 at 7:00 p.m. ET. Both Marc Yale and Hannah Yale from the IPPF are nominated! Register here: https://t.co/O0rvIlVD7b #healourskin @EveryLifeOrg @RareAdvocates
I was once invited to a roundtable meeting to teach me how to #advocate for our daughter & her #RareDisease Clearly I knew how to advocate for her, ❤️ is my guide #bigpharma wanted to “teach” me how to advocate for them. I will not be a pharma pawn. #rarevoice #notfundedbypharma
So ready for the Rare Voice Awards tonight! https://t.co/gv1f10gswU #rarevoiceawards2020 #iamrare #CareAboutRare #Everylifefoundation #rarevoice #RareDiseases #valleyfever #RSD #dystonia #hornerssyndrome #rarediseasewarriors #everyvoicematters
The wait is finally over, RARE Youth Revolution has begun ...watch Nicola’s #teatimetalk to find out all about the exciting news!
https://t.co/77fX3HqL3l
#RARERevolution #RAREVoice #RAREYouthTeam #thankyou #new
Are you a young person with a RARE condition? Use your #RAREVoice and have your story heard. Join #RAREYouthRevolution. To help guide the direction of this movement please get in touch.
https://t.co/8v6Ku7giov
Social media takeover for international +100k patient advocate network @wegohealth this week. Sitting in on virtual pharma conference as a Rare Disease Patient voice. #efpvirtual #raredisease #gaucherdisease #rarevoice
My takeaway so far: We are all adapting to a new world. HCP/Pharma brands have the opportunity to redefine their mission with a focus on patients... This is what I'm learning at #efpvirtual #efpphilly -@leannadmullen.
Thank you Noah for sharing your story. #patientvoice #rarevoice #RDDNIH @TheChildrensInn @ncats_nih_gov
Thank you to our partners at @NIH and @ncats_nih_gov for allowing Noah to share her story. Learn more about Noah and how your support of The Children's Inn makes a positive impact on #RareDisease patients just like her: https://t.co/euX1z2Eanh #RDDNIH
Congratulations to our 2019 #RareVoice awardee Isabel Bueso for having the honor to attend the #StateOfTheUnion for her advocacy work as @MarkDeSaulnier's guest
I am delighted to announce Isabel Bueso, a recipient of medical deferred action and a rare disease advocate, as my guest to the State of the Union.
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