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Need a midweek pick-me-up? Check out this heartwarming story of a
@DairyQueen allowing an 8-year-old with#Moyamoya to be manager for a day! Random acts of kindness like this can make a world of difference to children battling a#raredisease.https://wgxa.tv/news/local/8-year-old-with-rare-disease-becomes-manager-of-local-dairy-queen …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Now kids impacted by a disability will be able to see themselves represented by a character in a new Netflix show “The Healing Power of Dudes.” Amara, played by Sophie Kim, who has
#musculardystrophy and has used a wheelchair since she was 4.#inspirationhttps://www.respectability.org/2020/01/netflix-healing-powers-of-dude/?fbclid=IwAR3DLdkSrX98zNMEXMAT5QnAMN6EO1X2wqu5HN-exfj1eEsxZzocemDAwT8 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Thank you so much to everyone who participated in the Ride to Cure Rare Disease in partnership with
@soulcycle! All funds raised are going directly toward our research collaboration to find effective treatments for#raredisease.#soulcycle#cureraredisease#research#charityridepic.twitter.com/is9pBkNy6G
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"Stories like this remind us why we work in the industry we do...They remind us how fragile life can be, and how we should all aim to make a difference." Our mission is personal. We're thankful for the support from
@JonBircher & everyone else behind us.https://freshthinking.cellohealth.com/post/102fx53/engaging-with-people-and-their-stories-of-life-with-a-rare-disease …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
"We sat in front of all of our doctors..they just told us to go home and make as many memories as we could for the time we had." Parents of children with rare diseases are told this too often. It's a heartbreaking experience that we are determined to end.http://bit.ly/2S1dlJn
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Looking for some simple ways to make a difference? Check out these eight easy fundraisings options for Cure Rare Disease! https://cureraredisease.org/help-fund-treatments/ …
#charity#nonprofit#duchenne#research#scientificresearch#lab#raredisease#geneediting#genetherapy#cripsr#fundraise#donateHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
A reminder that our customized therapeutics webinar is TOMORROW at 8PM! Have you been curious about how Cure Rare Disease is using customized therapeutics to treat
#musculardystrophy? Learn all about it directly from our founder,@RichHorgan. https://events.genndi.com/register/819005285141056214/b632e941d6?fbclid=IwAR13Ia-vOPklD0o8ZwoJ8zHx3pGpf8S84Fkx-GzeATMPXmo-SUrWl_s7lI4 …#duchenneHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
When people see a family affected by disability, it's easy for an able-bodied sibling to get overlooked and lost in the shuffle. This week's blog is from the perspective of a glass child— a healthy sister who has two brothers with
#Duchenne. https://cureraredisease.org/blog/hello-im-a-sibling-and-im-here-too/ …#rarediseasepic.twitter.com/onyHghegu4
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We are so proud to be partners with
@CRiverLabs! Together we’ll change the way#rarediseases are treated.https://twitter.com/CRiverLabs/status/1220363313227288576 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Fundraising allows us to make our
#raredisease research progress faster. You can sign up to automatically donate the change from your everyday credit card purchases to help fund our groundbreaking science. It’s that easy! To learn more and sign up, visit:https://roundup.app/p/cureraredisease …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Cure Rare Disease is on the cusp of a major breakthrough. Read the latest profile on our founder
@RichHorgan and how we’re pioneering customized medicine to treat rare, genetic diseases. https://musculardystrophynews.com/2020/01/20/rich-horgan-pioneers-customized-medicine-cure-brother-dmd/ …#raredisease#genetherapy#crispr#PrecisionMedicine#duchenneHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Cure Rare Disease x
@soulcycle fundraiser is coming up quick! It's a regular SoulCycle spin class—but all the proceeds to directly to us! This weekend in New York City and next weekend in Dedham, MA. https://www.facebook.com/events/584519945694979/ …#soulcycle#spin#charity#raredisease#ridetocurerdHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Not every doctor can be an expert on each
#raredisease, but when something is so central to your life, every decision matters. Recently@RichHorgan spent 6 days alongside his brother in an unfamiliar hospital after Terry, who has#duchenne, had an accidenthttps://cureraredisease.org/blog/in-a-world-unequipped-for-rare-disease/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Cure Rare Disease founder,
@RichHorgan, speaking about our collaboration to pioneer customized medicines with the@CRiverLabs team. Thank you for having us! Collaboration is the#keytosuccess#charlesriverlabs#raredisease#duchenne#genetherapy#customizedtherapeutics#crisprpic.twitter.com/pykx0sTZC3
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Join our new online community for all people and things
#raredisease—whether you're a patient or a family member impacted by rare disease, this group is just for you. Battling a#raredisease can bring loneliness. We're here to tell you: You are not alone. https://www.facebook.com/groups/772769496546154/?__xts__[0]=68.ARCbSYztpsQ4UYiBrckLFCp3y_yOUdWjdTupEHwpcu6LzXASecUFdxiGJSNp7fTQLA38uha-WCAhok1YGRqNWLG0vZ4CIdWjNNRLHKU7slguM86md0-OTt_Zg44Xu7yzp2iaL1V05Zkj4NE0adUZ1N9u4FT-8h5nrHQqF9Cuv53RaqALxvA2QIbB9K727kPBEoQsrVGBTGsZIkkaFJxAPwr6NHplH71Q4lSAFByeHaUgL1kXg6m3O_BBO7-tiTLeeBrKJlWcBfRkMokfxtVurkXy_pSyadH0ov0g8Qozq0hRoi6HAzinLnrvt8OVloTG6AM&__tn__=HH-R-R-R …pic.twitter.com/GFu0Gh5uv0
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Curious about how Cure Rare Disease is using customized therapeutics to treat
#musculardystrophy? Curious about what customized therapeutics are to begin with? Learn all about it directly from our founder@RichHorgan, during a webinar on January 29 at 8PM! https://events.genndi.com/register/819005285141056214/b632e941d6 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
We shared our milestones of 2019 & goals for 2020 which include completion of dose-finding for efficacy, FDA approval to dose first patient with first-in-man customized therapeutic & further advancing our 1st cohort of patients. Read it all here:https://finance.yahoo.com/news/cure-rare-disease-review-140000657.html …
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Has a rare disease diagnosis ever made you feel abandoned by your friends or family? This week resident blogger
@KirstenParisi1 grappled with her feelings and frustration with absent friends during difficult times. https://cureraredisease.org/blog/the-new-world/ …#raredisease#duchenne#community#dmdHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
The Ride to Cure Rare Disease continues! This time with
@soulcycle! Two locations in New York City and one in Dedham, MA. RSVP and register for your ride here: https://facebook.com/events/s/cycle-to-cure-rare-disease-at-/584519945694979/?ti=icl …#raredisease#ridetocure#soulcycle#charityride#spinclasspic.twitter.com/OxHVuhM96v
Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Catch up on the latest post from our resident blogger,
@KirstenParisi1, on her experience with a#duchenne#clinicaltrial termination. New post coming Monday. https://cureraredisease.org/blog/clinical-trial-the-good-the-bad-and-the-reality/ …#duchennemom#dmd#trial#blogger#raredisease#rarediseaseblog#clinicaltrialsHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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