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In a letter sent to Congress the
#EveryLife Foundation along with dozens of patient advocacy organizations, urged Congress to enact policies that would help ensure prompt and equitable access to innovative treatments, such as gene therapy --> https://bit.ly/3bcHDle pic.twitter.com/QljWniSpNF
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"I didn’t have to words to articulate my pain so I painted my hopelessness onto paper". Shaniah (
#RareArtist2019 Contest Awardee) Check out her full story here --> https://bit.ly/2tsdCNk pic.twitter.com/7c3rNPz720
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Rare Disease patients need access to more cures, not less! Please tell Congress to reject dangerous IPI proposals that could impact the availability of already scarce treatments and quality of care. For more info visit --> https://bit.ly/37V6OH2
#ipi#OpposeIPI#SOTU2020pic.twitter.com/PI89q9vWL0
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"My disease keeps me from doing so much, but I still try to find times to shoot and create". -Jenn (
#RareArtist2019 Contest Awardee) Check out her full story here --> https://bit.ly/2tsdCNk pic.twitter.com/i5s1FAurMF
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"Cardiomyopathy is a rare heart condition that has affected my entire family. My dad has it, and my two older brothers died from it. This drawing, is in honor of them".-Lauren (
#RareArtist2019 Contest Awardee) Check out her full story here --> https://bit.ly/2tsdCNk pic.twitter.com/8tG4UBhhwa
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Congratulations to our 2019
#RareVoice awardee Isabel Bueso for having the honor to attend the#StateOfTheUnion for her advocacy work as@MarkDeSaulnier's guesthttps://twitter.com/RepDeSaulnier/status/1223256772670042115 …
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To do nothing - because we cannot do everything - would be irresponsible.
#ExpandedAccessSummitPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"Is some access better than no access? Is it possible to prioritize the need of one dying child over another? There are no easy answers. Thank you to the developers who recognize expanded access as an imperative". -Annie Kennedy Chief of Policy and Advocacy
@EveryLifeOrgpic.twitter.com/GcAtuYS5mE
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EveryLife Foundation proslijedio/la je Tweet
ATTENTION new and experienced
#RareDC2020 advocates! We want to give you as much information as possible and answer all your questions before you head to Washington D.C. Visit http://rareadvocates.org/rdw and make sure you register for our February Webinars.pic.twitter.com/p91SyNGnYK
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"My left hand is completely paralyzed and I have limited motion in my right hand. I can’t hold a pencil or paint brush so I paint with my mouth". -Alex (2019 Rare Artist Contest Awardee) Check out his full story here --> https://bit.ly/2tsdCNk
#RareArtist2019pic.twitter.com/zuHg3XAVjn
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EveryLife Foundation proslijedio/la je Tweet
Learn about exciting changes regarding expanded access to medications that have the power to improve lives at the third annual Expanded Access Summit in Washington, DC starting today!https://easummit.net/
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EveryLife Foundation proslijedio/la je TweetHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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Hannah Heinrich is a sibling of not one but two that have rare medical diseases... her dream is to ease the pain of family members going through a rare disease. (2019 Rare Artist Contest Awardee) Check out her full story here --> https://bit.ly/2tsdCNk
#RareArtist2019pic.twitter.com/oby6Meud9W
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We are working with
@_OurOdyssey_ and@One_Rare_ to better understand how we can support young adults (16-30 years old) in the rare disease community. Which of the following topics are you interested in learning more about?#raredisease#youngadultsHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"One of the best attributes of healing from any disease is to have hope that a new dawn will arrive and you will get to breathe in life" (2019 Rare Artist Contest Awardee) Check out her full story here --> https://bit.ly/2tsdCNk
#RareArtist2019pic.twitter.com/ItOOyJcxRD
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"Even in our darkest moments living with a rare chronic disease, we find the joy and bursts in the simple things in life" -Jennifer Virag (2019 Rare Artist Contest Awardee) Check out her full story here --> https://bit.ly/2tsdCNk
#RareArtist2019pic.twitter.com/bEHi6rKL7V
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The
#ExpandedAccessSummit brings together world leaders who are integrating treatment-use trials in the clinical development of new therapeutics for serious diseases. To register visit -->https://bit.ly/2tD5Xfb pic.twitter.com/BbObC99gKJ
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"I was born with Hurler Scheie and diagnosed at the age of 5. At the time, my life expectancy was only the early teens. I’m now 22 years old, a college graduate, and I’m living my best life possible". - Bryce Czekansi (Based on an original painting by Jane Font)pic.twitter.com/Htokp9gES4
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"Nature has always helped me through tough times and has been a heavy inspiration". - Chloe Hoover (2019 Rare Artist Contest Awardee) Check out her story --> https://bit.ly/2tsdCNk
#RareArtist2019pic.twitter.com/kzYScKhtgt
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"Dreams do happen, and great things happen in effort" -Mark Dant
@C4AHCpic.twitter.com/6RGL9GAnq1
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