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Harmony 4 Hope proslijedio/la je Tweet
I’m so excited to share my family’s story of rare disease and perform some songs I’ve written because of it at the
@harmonize4hope Rare Storytellers event on February 27th!! I love this community and it’s a gift to… https://www.instagram.com/p/B8NPFTfBMGM/?igshid=3hv5gzptbw2b …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
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Our
#RareDiseaseDay event at@MarquetteU on Feb. 27 is sure to be star-studded!
We’re excited to announce that H4H Musical Ambassador and Rare Storyteller @camjammusic will be joining us to drop a beat for aHUS.#RareRockstarhttps://bit.ly/2S7eBuAPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
As you get ready to celebrate
#RareDiseaseDay, check out our newest H4H Musical Ambassador and#RareStoryreller,@camjammusic, who’ll be turning up the volume for Atypical Hemolytic Uremic Syndrome (aHUS)@MarquetteU on 2/27! https://bit.ly/2RNKMAp#PlayThisFWDpic.twitter.com/6Zw2fgp2qS
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We’re less than a month away from our Rare Disease Day concert at
@childrenswi. During the show, During the show, we’re honored to gift a Beamz Device to the Rockstar Music Therapists at CHW. Learn more about how this device is making music accessible
https://bit.ly/2tw3nYc Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Feeling like you need a midweek pick me up? Check out one of our awesome H4H Rare Playlists on Spotify to hear some of our favorite hits, including “Beautiful” by Christina Aguilera! https://spoti.fi/30ULcru
#PlayThisFWDpic.twitter.com/zJSAvzFzn6
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We’re getting excited for the 3rd annual Rare Disease Day celebration at
@marquetteu on Feb. 27! We can't wait to hear from#RareStoryteller Linda Bevec, who will be amplifying the beat for Auto Recessive Polycystic Kidney Disease/Congenital Hepatic Fibrosis.pic.twitter.com/Tel4vy7trN
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Thanks 4 helping us shine the light on
#RareDisease.https://twitter.com/HHCaregiver/status/1220724703821803536 …
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We are proud to have
@NUFeinbergMed as a partner in our mission to cultivate awareness and education around Rare Diseases like Cystic Fibrosis.#RareRockstarshttps://bit.ly/30CpmswHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Just when you thought February couldn’t get any better, we’re excited to announce we’ll be hosting a rockin’ Rare Disease Day concert at
@childrenswi on Feb. 28 with special guest & H4H musical ambassador@trapperschoepp! Stay TUNEd here for more information!#RareRockstarpic.twitter.com/PdZSWXfRj2
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Harmony 4 Hope proslijedio/la je Tweet
The FDA makes a designation of CUTX-101 for the treatment of a rare pediatric disease, building on pre-existing designations in efforts to speed up development for Menkes therapies.http://ow.ly/TddC50xYFQs
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Harmony 4 Hope proslijedio/la je Tweet
If you're going through a hard time, remind yourself that it won't last forever. You'll be stronger and smarter on the other side. You'll build resiliency to carry you through future hurdles. Challenges teach us to appreciate the good times.
#mondaymotivationpic.twitter.com/gF0OTENF0n
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Roses are red. Violets are blue. Do you love
#MusicMonday as much as we do?! Check out one of our rockin' Rare Playlists on Spotify to help you dance away those Monday morning blues: https://spoti.fi/366KXL8#PlayThisFWDpic.twitter.com/LYe8O1JNUJ
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Did you know that American Singer/Songwriter, Woodie Guthrie and members of his family have battled Huntington’s Disease (HD)? Look what’s happening in America’s Heartland today for HD
#RareRockstarhttps://bit.ly/3ahKI30Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Harmony 4 Hope proslijedio/la je Tweet
ATTENTION ALL PATIENT ORGANIZATIONS! The National Burden of Rare Disease Study aims to determine the true economic cost of rare disease. We're seeking the participation of patient organizations to be part of a survey. Please email Kara Mossler kmossler@everylifefoundation.orgpic.twitter.com/YFVxmUThiF
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Thanks 4 sharing our
#RareDisease tune. Hope to see you there!https://twitter.com/harmonize4hope/status/1217893602896097280 …
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For the third year in a row, we’re carrying our tune back to
@marquetteu for Rare Disease Day 2020! On February 27, join us for a rockin’ celebration of all things RARE. Stay TUNEd for upcoming announcements on which#RareRockstars will be making an appearance!pic.twitter.com/DVrFc0iGiM
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Have you followed one of our awesome H4H Rare Playlists on Spotify yet? Head on over and listen to some of our favorite hits like “Overcomer” by Mandisa, today! https://spoti.fi/2Z4NqD4
#PlayThisFWDpic.twitter.com/qAUfe6RS3p
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Harmony 4 Hope proslijedio/la je Tweet
Sara Kennicott is a believer of hope. It was this hope that led her and her husband to found
@Hope4bridget in honor of their daughter, Bridget Rose, who was diagnosed with Batten Disease at the age of three. Learn more about this#RareStoryteller: https://bit.ly/2sYf8q4 pic.twitter.com/4RNNfAQN0b
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