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Stephanie Fischer proslijedio/la je Tweet
If you do nothing else in this life, live and work for something bigger than yourself. A shallow life or a self-serving life is a truly a life wasted. The world is full of causes and people in need.
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
Parents Sanam and Ben open up about their son, Eli, who has a genetic disorder that’s so rare it doesn’t even have a name yet. Hear about their fight for more research and find out how you can help find a cure. For more, visit
@StandByEli.https://thedrs.tv/2tyrl5kHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Amberly’s approach is Perspective, Acceptance, Community, Endurance & Rest. The most difficult for her is rest, because rest is looked at as a luxury in society but is really a necessity. <—I suspect this will resonate with people living with other
#RareDiseases, too.https://twitter.com/RarePOV/status/1225073374000488451 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Thanks to
@TheDoctors who#CareAboutRare! Today they featured Amberly who developed#CRPS after her leg was severely injured in an accident: “34 surgeries was a lot but it was really the easiest part. The hard part is getting through the pain every day.”https://www.thedoctorstv.com/articles/how-woman-uses-positivity-to-overpower-her-pain …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
Thank you to everyone who has followed along with the
#DataDIY series. You can find resources for all of the workshops here:https://globalgenes.org/data-diy/Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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@KhrystalKDavis is a vocal advocate for#newbornscreening & whole genome sequencing as needed.#DataDIYhttps://twitter.com/globalgenes/status/1224819771578830849 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
Community health workers are a really important bridge to underserved populations. They can be your eyes and ears so that you know a community’s real concerns and needs.
#DataDIY#RareDiseaseHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Regarding including minorities at much higher rates in
#clinicaltrials for#rarediseases,@ichristianr_ of@globalgenes says “Good science requires it. Good treatments require it.”#DataDIY

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Michael Hume of
@EBResearch talks about venture philanthropy providing a seat at the table with other investors for conversations around pricing (as the voice of the#RareDisease patient community), and to bring the sense of urgency to discussions.#DataDIYHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Loved this video shown at
#DataDIY. “I tell people I was born different. But we’re all born different, And that’s great.” Thank you to Eli for encouraging people to#ComeSayHi to folks who may look a little different, rather than staring or making mean comments.#CareAboutRare https://twitter.com/ebresearch/status/1168607021869879296 …Tweet je nedostupan.Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
Thank you for the shoutout
@RarePOV! We agree wholeheartedly with this sentiment! We as a community must elevate & support young motivated researchers to focus on#RareDiseases to reach our long term goal of new therapies and one day, cures!#DataDIYhttps://twitter.com/rarepov/status/1224718496778674177 …
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Slide by Dr. Spencer of
@BioPontis on how#RareDisease patient orgs can prepare for drug discovery & development makes me think of@UpliftingAth Young Investigator Draft. Providing early-stage researchers with funding is helpful as is recognizing their commitment.#DataDIYpic.twitter.com/u4vjTcu945
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Listening to David Spencer of
@BioPontis discuss how#RareDisease advocacy organizations can lay the groundwork for drug discovery & development, including natural history studies.#DataDIY https://twitter.com/globalgenes/status/1224707344354902017 …pic.twitter.com/Q1Rf62XqQW
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
Please RT. Thumbs up
@chrisunkim. Every word in your powerful@nytimes article is true. I, and millions of us who use American Sign Language, stand with you.#superbowl#signlanguage#nationalanthem#access#FoxSports#patriotism#deaf#deaflifehttps://www.nytimes.com/2020/02/03/opinion/national-anthem-sign-language.html …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
To ALL networks: next time at
#SuperBowl when the signer like@chrisunkim is performing#NationalAnthem & America the Beautiful they should be on the broadcast the WHOLE time, not a few seconds. SHOW the beauty of ASL either in a bubble, split screen or next to singer It’s time!pic.twitter.com/C9gKykgZAIHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
@RarePOV
Please share
Proud to be included in this #raredisease awareness campaign by@TakedaPharma#IAmNumber17http://iamnumber17.geneticalliance.org.ukHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Exciting to see the list of
#raredisease organizations that will receive#RareAsOne funding, tools & training from@cziscience! Congratulations to each of them, including@KIF1A,@chromosome8p,@congenitalhi &@LGS_Foundation!https://chanzuckerberg.com/science/programs-resources/rareasone/network/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Stephanie Fischer proslijedio/la je Tweet
Love this ad and it's message. We need to reconsider our
#priorities. While I admire and celebrate the incredible skill of athletes and actors, the scientists and researchers trying to save the lives of our#rare kids are my heroes. How about you?https://twitter.com/RarePOV/status/1223978697801240576 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
“What if we lifted up scientists and doctors the same way we lift up professional athletes? What if we supported the world’s best & brightest researchers working on the next breakthrough treatment?”
#WeTackleRare#CareAboutRare https://www.kif1a.org/wetacklerare/ via@KIF1A &@UpliftingAthHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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