Kulsrud Brothers retweetledi
You may have heard rumors the NBIAcure team is working on a new treatment for PKAN. We have exciting news to share: nbiacure.org/announcement-p…
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Kulsrud Brothers
107 posts
Kulsrud Brothers
@KulsrudBrothers
The official Twitter account of the Kulsrud brothers. Lane, Tanner and Ty have been diagnosed with PKAN, a rare neurological disorder. Follow their story here.
Grace City, North Dakota Katılım Nisan 2014
93 Takip Edilen144 Takipçiler
Grateful for the work @MartinShkreli has done and continues to do... nyti.ms/1lEE9x2
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Hopeful that we can participate in Phase 2 of the study! #RTRX
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We are so excited that @US_FDA has approved the IND for RE-024 and phase 1 of clinical trials will begin soon!
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RT @Retrophin:RTRX Announces FDA Review of IND for RE-024 and Clearance to Proceed With Phase 1 Clinical Study: yhoo.it/1EwsdCm $RTRX
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Fighting for the Right to Try...inforum.com/news/3697002-n…
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We nominate @US_FDA Commissioner Hamburg for the ALS challenge! #RareDisease #fightPKAN youtube.com/watch?v=E8jFy6…
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“@LKulsrud: Thanks to Bloomberg! mobile.businessweek.com/articles/2014-…”
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“@ColfaxCapital: The Difficult Questions Raised When Some Patients Get Untested Drugs - Businessweek via @BW buswk.co/1whZct0 $RTRX”
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@Billy_Jacob thanks! We're hoping for an answer soon as well!
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@joshduhamel Please RT to share our petition and help us get medicine that could save our lives! Need 100,000 sigs! wh.gov/luzA2
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We have a Right to Try the drug RE-024, it is our only chance at this point! @SenatorHeitkamp @SenJohnHoeven please help us! #fightPKAN
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4,287 signatures = 0.6% of the population of ND. Keep sharing, people! We need to reach out farther! wh.gov/luzA2
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Kulsrud Brothers retweetledi
A family with 3 sons dying from a rare disease is petitioning to try an experimental drug. bit.ly/1AjxpH5
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Thanks @bistrib for sharing our story! #fightPKAN #Kulsrudpetition m.bismarcktribune.com/news/local/art…
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Over 1,700 signatures & counting...keep 'em coming! Please sign and share this petition: wh.gov/luzA2 #fightPKAN #Kulsrudpetition
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