The official Twitter account for the Neuro Connect Summit that will be held in Rockville, MD on May 4-5, 2019. #NCSummit19 #neuroconnect
Joined January 2019
- Tweets 94
- Following 4
- Followers 35
- Likes 5
17 Photos and videos
7 May 2019
We're still reeling from #NCSummit19... we'll have more to share in the coming weeks! Stay tuned! Thanks again to all involved! #neuroconnect
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Neuro Connect Summit 2019 retweeted
Thanks to Miss Tupelo 2019 for joining us at
@NCSummit19 & this year's #uniteatthehill! A #ChiariWarrior herself, she bravely used her platform to raise #awareness for #Chiari & rare disorders. She provided a voice for millions! #advocacymatters #MissAmericaOrganization
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7 May 2019
Thanks to @PopSuperhero for sharing her inspirational story ✊❤️ and providing patients who may be struggling with the power to #cope. 🧠🦓💪#NCSummit19 #neuroconnect
7 May 2019
Still Catching my breath
returning from speaking at #NCsummit19 🧠 🦓🤓
So much new info to share!
#lynnjulian #patientAdvocate
#dysautonomia #pots #EDS
#speaker #author #EhlersDanlos
#EhlersDanlosSyndrome
#mastcell #MCAD
#TBI #TBIgirl #braininjury
#Lyme #LymeDisease #LymeLynn
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Neuro Connect Summit 2019 retweeted
7 May 2019
🦓❤️🙌🏻❤️🦓 Yay! Thank you all for your hard work and #PatientAdvocacy #EDSAdvocacy #POTSAdvocacy #GastroparesisAdvocacy from those of us who physically couldn’t attend; we’re so grateful for your voices. ❤️🦓❤️ #ZebrasDazzleTogether #EDSZebraFamily #OnlyRarelyDiagnosed
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6 May 2019
Hey, Capitol Hill! We have arrived! #uniteatthehill #NCSummit19 #neuroconnect @bobbyjonescsf @TheEDSociety @DysSupport
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Neuro Connect Summit 2019 retweeted
Sooooo.. THANK YOU to @PCORI for leading the way and helping us put the patient and family first. Today, we are storming Capitol Hill to personally ask our Congresspersons to reauthorize this important work in 2020 and beyond!!!
#uniteatthehill #advocacy (13/13)
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Neuro Connect Summit 2019 retweeted
But most importantly, #PCORI is the national leader shifting the entire #healthcare sector towards the patient. And being #patientcentered is the ONLY way to research and properly treat #chronicillness.
#uniteatthehill (12/?)
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Neuro Connect Summit 2019 retweeted
The issues of #chronicpain and #opioids are priority research areas at #PCORI... and this is an area that severely affects patients and families struggling with #Chiari, #syringomyelia, #EDS, #dysautonomia and other disorders.
#uniteatthehill (11/?)
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Neuro Connect Summit 2019 retweeted
They’ve built a huge network of patient- and clinician-run databases to harness more big data and to promote data sharing for faster answers to big questions! This network is @PCORnetwork!
#PCORI #uniteatthehill (10/?)
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Neuro Connect Summit 2019 retweeted
#PCORI is innovating the way research is done in other ways, too, beyond prioritizing #patientcenteredness.
#uniteatthehill (9/?)
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Neuro Connect Summit 2019 retweeted
...#PCORI also funded a $2.8M comparative effectiveness study to benefit children affected by #Chiari and #syringomyelia whose lead investigator is CSF medical board member, Dr. David Limbrick!
#uniteatthehill (8/?)
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Neuro Connect Summit 2019 retweeted
... #PCORI funded a $50,000 grant for an #EhlersDanlos Co-Morbidity Consortium and...
#uniteatthehill (7/?)
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Neuro Connect Summit 2019 retweeted
#PCORI has already funded research that directly addresses our conditions, which usually go understudied from other research bodies...
#uniteatthehill (6/?)
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Neuro Connect Summit 2019 retweeted
#PCORI is funding research that MATTERS to patients and families affected by chronic illness. They’ve funded over $2B in comparative effectiveness research in the few short years they’ve been around!
#uniteatthehill (5/?)
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Neuro Connect Summit 2019 retweeted
#PCORI puts patients and caregivers first in research. They understand that no one knows a condition better than the people who are affected by it every single day.
#uniteatthehill (4/?)
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Neuro Connect Summit 2019 retweeted
In 2016, the Government Accountability Office said that #PCORI is Meeting it’s legislative intent to incorporate #patientcenteredness into research and #healthcare.
#uniteatthehill (3/?)
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Neuro Connect Summit 2019 retweeted
#PCORI is the result of bipartisan politics— leadership on both sides of the aisle think #patientcentered care is important.
#uniteatthehill (2/?)
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Neuro Connect Summit 2019 retweeted
We are D E T E R M I N E D to get @PCORI reauthorized before Sept 30th of this year.... here’s a fun thread about WHY
So... why do we care that @PCORI is reauthorized after 2019? Well....
#uniteatthehill (1/?)
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6 May 2019
We got a bus of #advocates on our way to Capitol Hill to remind our Senate and House members to reauthorize @PCORI before the deadline of Sept. 30th! #NCSummit19 #neuroconnect #PatientAdvocate
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5 May 2019
. @LaraBloomEDS is presenting on the @TheEDSociety’s work and HEDGE study. #NCSummit19 #neuroconnect
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