Erik Paulsen
@ErikPaulsen
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Minnesota
Joined November 2008
These guys will always be my “roomies” - relationships that will last a lifetime. https://t.co/jvO8vU1KcD
@SteveScalise @realJohnShimkus @RepKevinBrady
washingtonpost.com
Rep. Erik Paulsen lost his reelection bid. But he got a good meal out of it from Steve Scalise, Kevin Brady and John Shimkus.
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“We are starting to see glimmers of hope where we didn’t see anything before but it is now time to kick the door open.” @ChildrensPhila’s Dr. Kiran Musunuru. #FacesofGeneTherapy
At today’s briefing on Capitol Hill, Dr. Kiran Musunuru shares more about his care for baby KJ at @ChildrensPhila
https://t.co/ez849sYvbL
#FacesofGeneTherapy @alliancerm
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A big thank you to everyone who came to Capitol Hill yesterday for our Congressional Briefing on Promoting Innovation and Access to Cell and Gene Therapies, co-hosted with @gene_therapies. 1/2
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I was honored to join @CoalitionHemoB podcast to discuss how #genetherapy is transforming treatment for #rarediseases - and how we can help advocate for policies that ensure patient access. Listen here: https://t.co/8fvi5iKwSS
hemob.org
The Power of Patient Stories with Erik Paulsen, Chairman at the Institute of Gene Therapies
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Valentine's Day is also IGT's 5th anniversary, so I wrote a quick post reflecting on IGT's progress over the past five years and our continued commitment advocating for patient access to gene therapies.
Today marks IGT's 5th anniversary! Together, with a new administration and Congress, we remain committed to educating about the value of #genetherpy and the importance of accurately assessing its impact for patients, families and our healthcare system. https://t.co/NDAPta3VMR
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#newbornscreening is so important for patients - especially those excited about the promise of #genetherapy
IGT urges #Congress & other stakeholders to improve access to #newbornscreening to help patients receive the gene therapies they need. Thank you @The_Brackbills @gaucheralliance @JenniferHandt @ErikPaulsen for raising your voices! BLOG: https://t.co/RRL9sIfl6M
#NBSAwarenessMonth
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The mission of @IRIglobal and @house_democracy is more important now than ever. I enjoyed being with my colleague Nick Rahall in Timore Leste
.@IRIglobal and @house_democracy met with Prime Minister @XananaG of #TimorLeste this week in Dili to conduct a technical assistance consultancy on #citizen and #CSO engagement with the National Parliament.
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May is #HuntingtonsDiseaseAwarenessMonth and in support of our friends in the Huntington's community we wanted to highlight this important perspective from our wonderful PAAC member @laurencurehd:
thehill.com
When you live with an incurable neurological disease that will shorten your life or have a genetic predisposition to becoming afflicted with that disease, the emotional roller coaster looping betwe…
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A huge thanks to @AEI & @DrBrian4Health for hosting a dynamic discussion on #genetherapy this week. Grateful to be a part of this incredible panel. If you missed our discussion, you can watch the full recording here:
gene-therapies.org
On February 14, IGT Chairman Erik Paulsen joined a panel of experts at the American Enterprise Institute’s (AEI) event, “Navigating Emerging Technologies in Cell and Gene Therapy,” which focused on...
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Join us in person or tune in virtually – I’m excited to dive deep into the policy and regulatory world of #genetherapy with this all-star panel.
Join us next week on 2/14 at @AEI for Navigating Emerging Technologies in Cell and #GeneTherapy @ErikPaulsen @RepGuthrie @US_FDA's Peter Marks, @ask_bio's Sheila Mikhail, @DrBrian4Health RSVP for in person/virtual:
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Exciting news for patients with todays announcement
Exciting news coming out of the UK today for the #SickleCell patient community! @VertexPharma @CRISPRTX have gotten the first-ever approval for a therapy to treat sickle cell disease and beta-thalassemia.
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I w/ emphasized Ambassador Klymenko how the US stands w/ Ukraine
While in Buenos Aires, our delegation received a surprise visit from Ambassador Yurii Klymenko, the Ambassador of Ukraine to Argentina. We were honored to be able to speak with the Ambassador and share FMC and the U.S.’s continued support for the nation of Ukraine and its people.
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Many serious & life-threatening disease populations are very rare, affecting as few as one patient globally. IGT advocates for modernized, flexible policy & regulatory frameworks to help advance #genetherapies for #patients living with #unmetmedicalneed. https://t.co/SFL8yP3jCo
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A great conversation about one of many patients’ journeys and the importance of ensuring access to #genetherapy. Take a listen to an outstanding Hill brief and discussion.
#ICYMI, IGT recently hosted its second Congressional Briefing highlighting ensuring access to #genetherapy so patients, particularly the #sicklecell patient community, can benefit from these transformational therapies. View the discussion here:
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Today @HouseCommerce / @EnergyCommerce will markup the #MVPAct – big thanks to my former colleagues @RepGuthrie @RepAnnaEshoo @RepMMM @RepAuchincloss @RepJohnJoyce @RepScottPeters for sponsoring this bill. Learn more about the MVP Act here:
gene-therapies.org
Patients, researchers, and other key stakeholders are weighing in on the importance of the Medicaid VBPs for Patients Act, or the MVP Act (H.R. 2666) as the legislation will be considered by the...
This morning the @HouseCommerce / @EnergyCommerce Committee will markup the #MVPAct, which will bring us closer to realizing the promise of #genetherapy for patients & families managing genetic, lifelong health conditions.
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Thank you @laurencurehd for having me on the @Help4HDI Podcast! Enjoyed the discussion about what #genetherapy could mean for Huntington’s disease patients. Thank you for your leadership and advocacy!
IGT Chairman @ErikPaulsen joined @laurencurehd on the @Help4HDI Podcast for a conversation about #genetherapy and the promise it holds for the rare disease community, including Huntington's disease patients. Check it out here: #HDAwarenessMonth
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IGT sent a letter to Congress applauding @RepGuthrie @RepAnnaEshoo @RepMMM @RepAuchincloss & @RepScottPeters for their sponsorship of the Medicaid VBPs for Patients Act, or the MVP Act. (1/2)
gene-therapies.org
Today, the Institute for Gene Therapies (IGT) sent a letter to Congress applauding Representatives Brett Guthrie (R-KY), Anna Eshoo (D-CA), Mariannette Miller-Meeks (R-IA), Jake Auchincloss (D-MA),...
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A really cool story about the incredible impact and promise of #genetherapy for patients and their families.
Nate Plasman, whose son has seen incredible results from an innovative #genetherapy, highlights the expansive value of these treatments. Learn more about the Plasman family’s story here:
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I am very excited to share @gene_therapies Value Principles. These were developed in collaboration with our Advisory Councils to ensure that the profound impact on many aspects of patients’ and their families’ lives are taken into account when determining value.
Gene therapies can significantly improve the lives of #patients, but it’s critical that our #healthcare system accounts for their unique value to ensure appropriate access & coverage. We are thrilled to release our #GeneTherapy Value Principles: (1/2)
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It’s nearly Rare Disease Day and we’re getting ready to demonstrate our support for the millions of people living with rare diseases. Will you #ShowYourStripes and help raise awareness of the impact rare disease has on people’s lives? #RareDiseaseDay
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Today is #RareDiseaseDay, and IGT is helping to advocate for a policy and regulatory framework that will help #raredisease patients access life changing #genetherapies. Learn more at https://t.co/2OLFipwY6T
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