#NORDSummit: Become Trend on twitter at (2017-10-16 23:01)


People talking about #NORDSummit: - Karynhede - TabbyMitchell - HorizonPharmCEO - TabbyMitchell - TabbyMitchell - RareActionFL - RareActionFL - TabbyMitchell - shhhhhhhhhhhhhh - andycrouse77[...]
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This Tag appearing in: United States: ( Indianapolis - ).
Popular tweets tagged with #NORDSummit:
#NORDSummit Jen OConnor @SidneyMWSπŸ” NORD’s Tim Boyd gives update on state priorities for #raredisease legislation #NORDSummit
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Anna C.E. Hurst @acedensπŸ”Are you up for the challenge? Go to say5rare.org #say5rare #challenge #NORDsummit #rarediseases
#NORDSummit Frank Rivera @SarcoidosisofLIπŸ”Thank you @RareDiseases for a great final session for Monday! #NORDSummit
#NORDSummit Rachelle Dixon @RachelleM_DixonπŸ”Alone we are rare. Together we are Family. We are HSAN1E Family. #NORDSummit #raredisease
#NORDSummit#NORDSummit#NORDSummit Rare Diseases @CheckOrphanπŸ” So happy to be here at the #NORDSummit @CheckOrphan #rarediseases @RareDiseases
#NORDSummit PSC Partners @PSCPartnersπŸ”#NORDSummit - a respite from public policy @RareDiseases @julieraskin
#NORDSummit steve usdin @steveusdin1πŸ” Why do Copays exist for #rarediseases when there is only one option? #NORDSummit
#NORDSummit MDS Foundation, Inc. @MDSFoundationπŸ” Successful Strategies for Patient Organizations breakout group! @RareDiseases #NORDSummit
#NORDSummit Rare Action Florida @RareActionFLπŸ” Alone we are rare. Together we are:____________________. #NORDSummit #rarediseases @RareDiseases
#NORDSummit Tabby Mitchell @TabbyMitchellπŸ” Great start to the #NORDsummit with @themighty
#NORDSummit Karyn Hede @KarynhedeπŸ” Alone we are rare. Together we are Family. We are HSAN1E Family. #NORDSummit #raredisease
Tabby Mitchell @TabbyMitchellπŸ”Woot. Woot. πŸŽ‰πŸ‘πŸŽ‰ #opensource #data is #whereitsat 🀘@iSenpaiLLC couldn't agree more #nordsum twitter.com mit
Tim Walbert @HorizonPharmCEOπŸ” .@US_FDA Commissioner Dr. Gottlieb shares that he is committed to working with the #raredisease community. #NORDSummit
Tabby Mitchell @TabbyMitchellπŸ”Always a pleasure seeing u . Love reconnecting w/those making a diff'ce in

Rare Action Florida @RareActionFLπŸ” In D.C. & tweeting during #NORDSummit? Let’s meet! Meet up by #NORD booth after policy session happening now!
Tabby Mitchell @TabbyMitchellπŸ”Keep up the great work on #rare #inherited #retinal disorders @FarrahRajabi πŸ’™πŸ˜Ž#nordsummi twitter.com t
Becka Rae @shhhhhhhhhhhhhhπŸ” What are some of the strengths and weaknesses of #newbornscreening? #NORDSummit
Andy Crouse @andycrouse77πŸ”Representing and our collaborative efforts to improve healthcare in AL at .
Tabby Mitchell @TabbyMitchellπŸ” Right To Try: expanding access to investigational therapies for those who do not qualify for #clinicaltrials. #NORDSummit
Tabby Mitchell @TabbyMitchellπŸ”Are you up for the challenge? Go to say5rare.org
Tabby Mitchell @TabbyMitchellπŸ” in - is about to make w πŸ˜ŽπŸ’²treatment twitter.com
815wrldtrvlr @815wrldtrvlrπŸ” Goals may differ but in the end, it’s all about bettering the lives of patients. #NORDSummit
Gon B Alright @Yunique1_πŸ” is excited to be among the 670 passionate advocates & leaders at
The Myositis Assoc. @TheMyositisAsscπŸ”@TheMyositisAssc is excited to be among the 670 passionate #raredisease advocates & leaders at #NORDSummit twitter.com
Regina Holliday @ReginaHollidayπŸ” I'm surprised... only one Walking Gallery jacket in the house? #NORDSummit @ReginaHolliday
The Myositis Assoc. @TheMyositisAsscπŸ”@TheMyositisAssc is here at #NORDSummit! Awesome! twitter.com
steve usdin @steveusdin1πŸ” Thanks @steveusdin1 on the Q re copay on life saving drugs w no other choices. #NORDsummit
Angela Davis @DavisAngesdavisπŸ”β€œNot sharing data is β€” I’m just going to come out and say it β€” unethical.” - Robert Nussbaum of πŸ˜πŸ™ŒπŸ‘πŸ‘
Elaine Blais @eblais2πŸ” Thanks to Kurt Karst for explaining the nuances of the #OrphanDrugAct and @US_FDA law. #PolicyDiscussion #NORDSummit
Klippel-Feil Freedom @KFS_FreedomπŸ”I'm in DC for ! Find me to learn more about the work going on at and our registry, !
Amy Nutt @AbductedLionπŸ”An honor to meet CEO/Founder is . Alone we are rare, together we are CHANGE MAKERS!
MHohn @MHohn7of9πŸ” I stand w the Rare Disease summit. There there in spirit!
AdvocacyRSS @advocacyrssπŸ”Panel discussion at on "Ethical Guidelines for Patient Org's & Industry to Collaborate" chaired by Prof
CHSG @CHsupportgroupπŸ” β€œWe’re 5-15 years behind when it comes to talking abt innovative ways to improve costs for patients.” #NORDSummit
CHSG @CHsupportgroupπŸ” It's important 2 have a primary physician that u can call 4 emergencies, questions, etc. #SuccessfulStrategies #NORDSummit
Sharon Rose Nissley @Rose_of_Sharon8πŸ” Being a good #RareDisease advocate means sharing your story & using your voice. #NORDSummit
Maggie Buckley @MaggieBuckley1πŸ” No one knows the patient better than the patient themselves or caregivers. Don’t take no for an answer. #NORDSummit
NORD @RareDiseasesπŸ” A great day spent with 600+ Rare Disease supporters. Can't wait for day 2 tomorrow. #NORDSummit.
NORD @RareDiseasesπŸ”Thank you to all of our speakers & panelists for a wonderful 1st day of #NORDSummit. Join us 4 networking reception after policy panel ends!
NORD @RareDiseasesπŸ”Our policy panelists are discussing Right To Try legislation patient-focused drug development, & opening up the floor for Q&A. #NORDSummit
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Michael Medwar @michaelmedwarπŸ” NORD priority that hits home for those w ALS - Medical Nutrition EquIty Act #NORDsummit
morgansfundorg @morgansfundorgπŸ”A great day spent with 600+ Rare Disease supporters. Can't wait for day 2 tomorrow. #NORDSummit.
Rena Conti @contirena1πŸ”At ? Join me on Day 2 @ 8am for an analytical look at development & availability >>
emad mahmood momani @daretamman1πŸ” β€œWe need to move more towards a system that bases cost on value of treatments.” #NORDSummit
ALS Advocacy @alsadvocacyπŸ”State RTT laws are toothless w/o a federal law... thus the importance of the federal discussions. #NORDsummit
Wendy Erler @WaveWendyπŸ”Day 1 of NORD Rare Disease Summit included excellent speakers and provocative discussion. Can you name 5 rare disease twitter.com s?
emad mahmood momani @daretamman1πŸ” #NORDSummit. great work for #RareDisease thank you
ALS Advocacy @alsadvocacyπŸ”Imo EAPs are just not attractive for developers of novel therapies for unmet need diseases w no other indications. EAPS<>panacea #NORDsummit
Stephanie Fischer @RarePOVπŸ”P Melmeyer: #curesnow requires companies to post #expandedaccess plans online; FDARA requires hard look at inclusion criteria. #NORDSummit
NORD @RareDiseasesπŸ”In D.C. & tweeting during #NORDSummit? Let’s meet! Meet up by #NORD booth after policy session happening now!
NORD @RareDiseasesπŸ”Right To Try: expanding access to investigational therapies for those who do not qualify for #clinicaltrials. #NORDSummit
ALS Advocacy @alsadvocacyπŸ”NORD priority that hits home for those w ALS - Medical Nutrition EquIty Act #NORDsummit
FLsun1 @FLpalmtree1πŸ” Things to focus on in the coming year: defending Medicaid, protecting the #OrphanDrugAct, and more...#NORDSummit
jsrsd society @jsrsd_societyπŸ”#NORDSummit. great work for #RareDisease thank you
Lisa Belfield @oz_iceprincessπŸ” Important to advocate for rare disease patients and families. #NORDSummit @CureNETs twitter.com
NORD @RareDiseasesπŸ”β€œWe hope to see you all at @US_FDA voicing your opinions & needs as #raredisease patient.” -Paul Melmeyer #NORD #NORDSummit
BJ Cavnor @1in4HealthπŸ” We need to assure affordability for tomorrow. #NORDSummit πŸ™Œ #PatientVoice
NORD @RareDiseasesπŸ”...Sign up at rarediseases.org (bottom of homepage) #NORDSummit
NORD @RareDiseasesπŸ”NORD’s policy team will be focusing on many important issues into 2018. Stay informed by signing up for emails from the team...#NORDSummit
James McArthur @cdnjamesgπŸ”Will Massachusetts 1115 waiver impact access to rare disease drug for Medicaid and particularly SCD patient Rx access? #NORDsummit
Tamblyn Green @thetamblynπŸ”Paul Melmeyer takes the stage to discuss what is going to focus on in 2018 for patients
NORD @RareDiseasesπŸ”Things to focus on in the coming year: defending Medicaid, protecting the #OrphanDrugAct, and more...#NORDSummit
NORD @RareDiseasesπŸ”Paul Melmeyer takes the stage to discuss what is going to focus on in 2018 for patients twitter.com
Matt Ward @mattwardfromageπŸ”In honor of the , RDR spoke with President/CEO about Marjorie Guthrie's impact on
RDLA @RareAdvocatesπŸ”Tim Boyd of @RareDiseases: AR, GA, KS, KY, MA, MI & MS are targets for state #RareDisease Advisory Councils in 2018 #NORDSummit
jsrsd society @jsrsd_societyπŸ”Gene therapy is not a cure but it is a miracle. It slams the breaks on a disease. --MarΓ­a Kefalas
James McArthur @cdnjamesgπŸ”#NORDsummit discussion on Massachusetts1115 waiver seeks to ignore FDA Approval Process and specifically targets 21st Centuries Curse Act???
RDLA @RareAdvocatesπŸ”Boyd of @RareDiseases: AL, CT, IL, NC & PA have #RareDisease Advisory Councils which facilitate conversation btwn stakeholders #NORDSummit
Jen OConnor @SidneyMWSπŸ”Tim Boyd, Dir of State Policy, discusses advancements in state policy for .
Jen OConnor @SidneyMWSπŸ” "We rely on our @RareAction state ambassadors. We couldn't [talk policy] without you." Tim Boyd (#NORD) #NORDSummit
NORD @RareDiseasesπŸ”Concerned abt what’s happening w/ #Medicaid in ur state? Get involved & make voice heard with rareaction.org #NORDSummit
Jen OConnor @SidneyMWSπŸ” β€œI can’t imagine where I’d be if I hadn’t been persistent.” -Erin Tite #NORDSummit
Les Jordan @ljrdn3πŸ”Interesting to see which States have Rare Disease Councils. But scary to see proposed MA regs on who can access new d twitter.com rugs.
Halos for MD @HalosforMDπŸ”Retweeted NORD (@RareDiseases):

We need to assure affordability for tomorrow. #NORDSummit πŸ™Œ


Halos for MD @HalosforMDπŸ” We need to assure affordability for tomorrow. #NORDSummit πŸ™Œ

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