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"Alexander's Film" premiered at the recent
@NiemannPickUK Annual Family Conference. The piece feat. Alexander Key and his parents who discuss their lives before & after Alex was diagnosed with NPC.#RareAware#CareAboutRare#shiningalightonNPC#RareDiseasehttp://ow.ly/INvU50xXkRIHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We're 1 month away from our 3rd annual
#rarediseaseday event! Join us for happy hour from 5-8 pm 2/28 at Antonelli's Cheese House in ATX, as we recognize World Rare Disease Day & celebrate the accomplishments & members of@Firefly_Fund's village. http://ow.ly/Wqkj50y82WN pic.twitter.com/d1ine2D6qU
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
About 50 percent of Niemann-Pick Disease Type (NPC) cases affect children before age 10. But some NPC patients, like Dee Reynolds of Northern Virginia, are not diagnosed until age 60.
#RareAware#RareDiseasehttp://ow.ly/BMn150xXkwUHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
FDA Drug Approvals Report for 2019 Highlights New Treatments for Rare Diseases https://www.ajmc.com/newsroom/fda-approves-new-treatments-for-rare-diseases … via
@AJMC_Journal#RareDisease#RareAwareHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Thanks to everyone who followed, liked & shared our social media posts last month to spread awareness of
@Firefly_Fund & our mission to find a cure for rare childhood neurodegenerative diseases like#NiemannPickC!#raredisease#jointheflight#fireflyfund#rareaware#NPCpic.twitter.com/3iuZYqRXWh
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
This
#GivingTuesday, give a little of your time or support to make a lot of difference for NPC patients and their families: http://ow.ly/x9jr50xqXcB#shiningalightonNPC1#RareAware#RareDisease#JoinTheFlight#FireflyFund#niemannpickCpic.twitter.com/MN0RcOJIQVHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We envision a world where every parent whose child is born with a
#RareDisease like NPC will know the diagnosis at birth through newborn screening & obtain early access to treatment. Help make that a reality for 100s of NPC families this#GivingTuesday: http://ow.ly/BmHx50xpIkX .pic.twitter.com/cnGUeTXDgk
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Ohio 2 year old battling rare Niemann-Pick-Disease dubbed childhood Alzheimer's: http://ow.ly/jIUc50wZswm
#RareAware#CareAboutRare #shiningalightonNPC1#jointheflightHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
“I know first hand the lengths parents will go to help their children — especially when they're sick. Pam & Chris, I support your valiant efforts to create the
#FireflyFund." - Actor, producer &@UTAustin professor@McConaughey https://youtu.be/h71fC-E-X4M#JointheFlight#RareAwarepic.twitter.com/rOFBFtUgih
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Girl, four, with 'childhood Alzheimer's' defies her death sentence to start pre-school and ballet classes after taking a trial drug: http://ow.ly/itVJ50wZsme
#raredisease#rareaware#shiningalightonNPC1#niemannpickcHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Firefly Fund proslijedio/la je Tweet
As a young toddler, Jeg was diagnosed with Crohn’s disease and Niemann-Pick disease type C. Now, he’s living life to the fullest, riding his dirt bike and pumping up the crowd as
#KidCaptain this Saturday! Meet Jeg Weets (6) from Morrison, IL. http://spr.ly/601013Bp0 .pic.twitter.com/edwKRpTJ9h
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"Through Pam & Chris' efforts & the village they've created with
@dellchildrens,@Ascensionorg, &@DellMedSchool, they will work together to treat & seek a cure for neurodegenerative diseases in children." -@DanRather https://youtu.be/1zDRUpghOtM#RareAware#jointheflightpic.twitter.com/B9zcpU06mH
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Rare disease council hopes to ensure families are not an ‘afterthought’ http://ow.ly/lF0z50wZrVZ
#raredisease#rareaware#careaboutrareHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Firefly Fund proslijedio/la je Tweet
Thank you
@MNK — the founding sponsor for@Firefly_Fund's national newborn screening initiative for NPC.#2019NBS#fireflyfund#shiningalightonnpc1#jointheflight#newbornscreeningsaveslives#rareaware#rarediseasepic.twitter.com/NWk41MN6LV
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Firefly Fund proslijedio/la je Tweet
Early diagnosis of
#NiemannPick is key to ensuring that families have timely access to the right management options. We support the@Firefly_Fund's advocacy for adding this severe condition to standard newborn screening panels.Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Technology Reshaping the Rare Disease Landscape, but Non-Scientific Challenges Threaten to Impede Progress
#rareaware#raredisease#NiemannPickChttp://ow.ly/4ImY50wZoKeHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Firefly Fund proslijedio/la je Tweet
This Company Just Provided a Grant for a Niemann-Pick Disease Type C Screening Program http://bit.ly/2MHzPOj
#raredisease#NPC#NiemannPickDiseaseTypeC@Firefly_FundHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Board Spotlight: MariBen Ramsey has served on 25+ nonprofit boards. She advises nonprofits in governance, board development, fund development, legal issues & planning. Learn how she's
#shiningalightonNPC1: http://ow.ly/BVWp50wZrFN#rareaware#raredisease#jointheflightpic.twitter.com/V1VmLCH48O
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We’ve joined w/
@AltruaHealthS on a Nov. challenge encouraging our supporters to reach 10K shares to raise $10K benefiting initiatives like NBS for NPC. 1 share = $1. Let's get sharing & don’t forget to encourage your friends & family to#jointheflight!http://ow.ly/nTZw50x09d7Hvala. 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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