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"Change mindset from donations to investments" - Venture Philanthropyhttps://twitter.com/GlobalGenes/status/1224729486710591490 …
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IndoUSrare proslijedio/la je Tweet
#OpenAccess is *critical* for rare diseases#RareDisease kids don't have until 2025 to wait to stop this nonsense. We need this NOW
https://twitter.com/lteytelman/status/1224218565445734401 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
IndoUSrare proslijedio/la je Tweet
Dr. Spencer says that patients and caregivers know a lot more about the disease than most of the physicians that they talk to. How do we get that input appropriately into clinical trials?
#DataDIY#RareDisease@BioPontisHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We will be there! Looking forward to it!
@Harsharajasimha@sanathkr_@rvkartha@naragovind@fdalawbloghttps://twitter.com/GlobalGenes/status/1224075182249316361 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
IndoUSrare proslijedio/la je Tweet
Dr Chris P Austin, Director,
@ncats_nih_gov stated that we have a systems problem in developing and deploying treatments for#RareDisease patients. We need a system that gets more treatments to more patients quickly.#EAP#EA3#ExandedAccessSummitpic.twitter.com/MyuAdSR5j2
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IndoUSrare proslijedio/la je Tweet
#SPINALMUSCULARATROPHY robbing the childhood of@curesmaindia taking away the ability to walk, play , eat and even breath.#spinraza the FDA approved treatment is beyond our reach.@WHO@UNICEFIndia@UNICEF@MoHFW_INDIA@NHPINDIA bring#spinraza Help Us Win#BattleAgainstSMApic.twitter.com/Te2dWTJLUI
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let’s pledge No parents has 2 go through d grief of burying their kids , Rest in peace dear Angels.
@curesmaindia parent r helplessly watching children dying slow death@MoHFW_INDIA@narendramodi@PMOIndia@AyushmanNHA@unwomenindia@socialpwds@biogen@Roche@Novartispic.twitter.com/nS8WzdVt5f
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Absence of several different types of clotting factors in the blood are associated with different varieties of Hemophilia. (1/2)
#EveryLifeIsPrecious#rarediseasepic.twitter.com/CqpgEL6och
Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
IndoUSrare proslijedio/la je Tweet
Breaking news!
New Jersey will soon start #SMA#NewbornScreening for all babies!https://www.nj.com/news/2020/01/infants-in-nj-will-now-be-screened-for-this-debilitating-disorder.html …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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"Orphan drug policies can have three objectives: improving access, incentivizing R&D, and lowering costs to patients." Joel Lexchin talks existing orphan drug policies in the U.S. and Australia, and what that will mean for Canada's impending policy.http://ow.ly/ekSN50xYF4D
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IndoUSrare proslijedio/la je TweetHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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IndoUSrare proslijedio/la je Tweet
We need
@SecAzar to ensure these life-saving programs continue! Please join us in asking him to do the right thing:https://twitter.com/MDA_Advocacy/status/1217826698399567872 …
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IndoUSrare proslijedio/la je Tweet
Day 3 at
#RareintheSquare. Don't forget to stop by and connect with the#raredisease community!#JPM2020pic.twitter.com/uUj6g72VqN
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Our Founder Chairman
@Harsharajasimha is at#rareinthesquare this week for#JPM2020. Great timing#India#RareDiseases#orphandrugs policy announcement today!#RAREX#collaborations@GlobalGenespic.twitter.com/uJIJaHnDIV – mjesto: Union Square
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Our Founder
@Harsharajasimha is at#2020rits#RareDisease#orphandrugs#collaborations#India#unitedstatesofamerica#JPM2020 meeting various stakeholders.@GlobalGenes https://twitter.com/GlobalGenes/status/1216782122461073408 …pic.twitter.com/AaH8TZrwdC – mjesto: Union Square
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MDA Awards More Than $1 Million in Venture Philanthropy Funding to AavantiBio to Develop Gene-Targeting Therapy for Friedreich’s Ataxia https://strongly.mda.org/mda-awards-more-than-1-million-in-venture-philanthropy-funding-to-aavantibio-to-develop-gene-targeting-therapy-for-friedreichs-ataxia/ …
#RareDisease#GeneTherapy@MDAorgHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
#India gets a national#RareDiseases policy. We welcome community comments. https://mohfw.gov.in/newshighlights/national-policy-rare-diseases-2020 …@Harsharajasimha@rvkartha@fdalawblog@RareDiseases@globalgenes@irdirc@UDNIss@ICORD_SCI@sanathkr_@vijaychandru@VJsapps@IGIBSocial@ORDRHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
My week on Twitter
: 4 Mentions, 3K Mention Reach, 5 Likes, 1 Retweet, 243 Retweet Reach. See yours with https://sumall.com/performancetweet?utm_source=twitter&utm_medium=publishing&utm_campaign=performance_tweet&utm_content=text_and_media&utm_term=c6864a8850834a0fee1a5d6a …pic.twitter.com/AmnfzmisSB
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IndoUSrare proslijedio/la je Tweet
Every month we will be celebrating a
#8phero! Check out our Facebook to find out more about the wonderful hero Lachlan a.k.a. Chow Chow! https://bit.ly/39Pzi6l#project8p#ilove8p#chromosome8pdisorderpic.twitter.com/g1vgs0JS0H
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Excellent
#CSR, we have a couple patients to refer. Great commitment by@ionispharmahttps://twitter.com/GlobalGenes/status/1215426813427638273 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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