Top Tweets for #MarchOnRare
Happy Monday! Looking forward to a good program with CTTI and the FDA. #patientperspectives #MarchOnRare https://t.co/3BvdbOaNtP
Happy Monday! Looking forward to a good program with CTTI and the FDA. #patientperspectives #MarchOnRare https://t.co/HckWnoZcx3
Thanks so much for having us! #MarchOnRare
Thanks so much for having us! #MarchOnRare
A little behind the scenes shot...Our #MarchOnRare activities continue with a quick #PremierVoices podcast chat with @taylorstale founder, Sharon King. Thank you, Sharon, for a wonderful day! https://t.co/DoWtoKevsN
A little behind the scenes shot...Our #MarchOnRare activities continue with a quick #PremierVoices podcast chat with @taylorstale founder, Sharon King. Thank you, Sharon, for a wonderful day! https://t.co/DoWtoKevsN
"Hope doesn't end. It changes, but it doesn't end." -- Sharon King @taylorstale #raredisease #MarchOnRare
"Hope doesn't end. It changes, but it doesn't end." -- Sharon King @taylorstale #raredisease #MarchOnRare
There are so many people who can make a difference to #raredisease patients and their families, such as the staff at the inn where Taylor's family stayed during the trial who provided hot meals, compassion, and more. #MarchOnRare @taylorstale
Taylor's family agreed together to participate in a clinical trial -- an overwhelming and time-intensive process -- "because it meant hope." #raredisease #MarchOnRare #lunchandlearn @taylorstale
Taylor's family agreed together to participate in a clinical trial -- an overwhelming and time-intensive process -- "because it meant hope." #raredisease #MarchOnRare #lunchandlearn @taylorstale
"No treatment, no cure, made no sense" - Sharon King on why she founded @taylorstale #MarchOnRare #raredisease
When Taylor's parents first got her diagnosis, even the name sounded ugly: "neuronal ceroid lipofuscinosis." These seemingly small details can have a serious impact on the disease burden for patients and their families. @taylorstale #raredisease #MarchOnRare
โBy telling Taylorโs story, weโre also telling the story of millions of rare disease patients around the worldโ - Sharon King on why naming @taylorstale was so important #MarchOnRare #RareDisease
Weโre honored to welcome Sharon King of @taylorstale to the RTP office today to share her journey as a patient advocate. Stay tuned to learn more about her story and how advocates like her are changing the face of clinical research. #MarchOnRare #raredisease
Got to the office this morning at 650. Might be just a little excited to help set up for our #MarchOnRare patient advocate event later this morning with @taylorstale founder, Sharon King. #raredisease
And last but not least, sending us her #CareAboutRare pic from the road, our fearless leader of all of our #raredisease work at Premier, it's Angi Robinson, VP, #RareDisease & Pediatrics! #MarchOnRare #PremierPeople #BuiltforBiotech https://t.co/6f2Aq9mFYp
Sharing this #RareDiseaseDay news with the evening crowd: As part of our #MarchOnRare focus on the #raredisease community, we've announced a #patientadvocate scholarship w/ @PPALSorg, if you're interested: https://t.co/OtfHsVFi1s
Love the creativity from our #PremierPeople team in the Czech Republic! #careaboutrare #RareDiseaseDay #MarchOnRare
Our #MarchOnRare inbox has been flooded with #PremierPeople in jeans in support of @GlobalGenes and #CareAboutRare! We'll keep posting as long as they keep coming in, but in the meantime, it's RTP checking in for #rarediseaseday! #BuiltforBiotech https://t.co/Hp6q0kAae9
Asking for selfies with jeans on is hard. But yay for this #MarchOnRare creativity from Spain! #RareDiseaseDay #CareAboutRare #rarediseases #PremierPeople #onthego #BuiltforBiotech
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