Andrea Hofelich
@hofelichaPR/comms pro; @RutgersU alum; tennis, travel & reading abt #science, #health & everything so I can answer my kids’ questions. Tweets my own.
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It was an early morning but full of many interesting policy conversations, including #rarediseases and #orphancures act. Thanks for hosting! #STATinDC
Our #STATinDC event is this Thursday, September 26! Register here: trib.al/kQaGNv8 See the full rundown of speakers and sessions ⬇️
While each of the 400 million people worldwide living with #RareDisease is on their own journey, together, they share a collective journey. In honour of #RareDiseaseDay this week, learn about the shared challenges of this community and why we will never stop delivering for them.
Glad to be at #FTPharma - enjoying the conversations about the future of #pharmaceutical and #biotech innovation.
We are live in DC tonight talking politics of health care. Learn more: trib.al/2KKcBsM #STATinDC
Malen fuer die seltene Erkrankungen! #ColourUp4Rare #RareDiseaseDay
Heute schon bunt geklickt? Wir laden Sie ein, an der #colourUp4RARE Mitmal-Challenge teilzunehmen. Helfen Sie mit, mehr Aufmerksamkeit für seltene Erkrankungen zu schaffen und den Bedarf an mehr #Forschung und Entwicklung neuer Therapien sichtbar zu machen. #RareDiseaseDay
@EveryLifeOrg Julia Jenkins adds in a conversation w/ Christina Hochul @AlexionPharmaUS "Since I started at EveryLife, we have seen a lot of progress but we have also seen Congress chip away at critical incentives. #Raredisease is in the larger drug development ecosystem..."(1/3)
Thank you to our sponsor @AlexionPharma for sponsoring today's event on Rare Disease Day, exploring the 40th anniversary of the Orphan Drug Act. #TheHillRareDisease bit.ly/3mbpPkC twitter.com/i/broadcasts/1…
WATCH LIVE: The Hill gathers policymakers and experts on Rare Disease Day for a conversation on The Orphan Drug Act. #TheHillRareDisease bit.ly/3mbpPkC twitter.com/i/broadcasts/1…
"There were no treatments available for those with rare diseases. Rare diseases just really aren't that rare, and that's what we've come to find so more than 25 million Americans have a rare disease, and there are more than 7000 known rare diseases," says @HeidiNRoss
WATCH LIVE: @TheHill’s Rare Disease Day: A Look at 40 Years of the Orphan Drug Act is starting! Got a question for the speakers? Tweet us using #TheHillRareDisease youtube.com/watch?v=qsR3oS…
For 40 years, the Orphan Drug Act has inspired countries globally to create policies that give promising rare disease treatments a fighting chance. Del Lebel, Head of Policy at @AlexionPharmaUS, shares how crucial it is for the US to remain a global leader:buff.ly/3HW5N6w
We are thrilled to announce our 2023 Committee Chairs! Thank you for your leadership and dedication to advancing greater awareness of the challenges and opportunities of discovering, developing and delivering treatments for those living with #RareDiseases. #OneRareVoice
We are thrilled to announce our 2023 Executive Committee! Thank you for your leadership and dedication to advancing greater awareness of the challenges and opportunities of discovering, developing and delivering treatments for those living with #RareDiseases. #OneRareVoice
Drug developers are making advanced discoveries & bringing innovative therapies to patients more quickly than ever. Rare Disease Caucus Co-Chair Rep. @DorisMatsui recognizes the vital role the #OrphanDrugAct has had in spurring this research for 40 yrs. #ODAat40 #RareDiseases
Last night marked my first time back on Capitol Hill in yrs & I was delighted to celebrate the 40th anniversary of the Orphan Drug Act w/ @RareDiseases & @AlexionPharmaUS ODA paved the way for the approval of >550 treatments for #rarediseases.
That’s a wrap on The 40th Anniversary of the Orphan Drug Act Congressional Reception! Thank you @RepGusBilirakis @DorisMatusi, and @RepWaxman for your leadership, and Alexion, AstraZeneca Rare Disease for your support. @AlexionPharma
#ValueAssessment is gaining traction with #healthcare decision-makers & policymakers. Join the PhRMA Foundation for a webinar providing highlights from our soon-to-be-released white paper, "Driving Progress in U.S. Value Assessment." Learn more & register: bit.ly/3Cojyat
Up until the Orphan Drug Act was enacted, only a handful of rare diseases had FDA-approved treatments, leaving patients feeling alone & forgotten. Today, more than 650 medicines have been approved for orphan conditions, giving patients courage to face the future. #ODAat40
Today marks the 40th anniversary of the Orphan Drug Act, a U.S. law that spurred tremendous progress in the development of treatments for rare diseases. Tamar Thompson reflects on this significant milestone and what it means for the #raredisease community.
Tamar Thompson, from @AstraZeneca Rare Disease, speaks to the complexities within the rare disease space, such as a family experiencing financial issues when one family member has to quit a job to take care of their child with a #raredisease. #MIHealthSummit
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