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CMDR Liquid kittens[Stephen] Nov 13
Commander down... looks like I'll be out of the Captain's seat for some time.
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Audacity Magazine Mar 3
How many of you have or ?
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Dan Prestegaard May 6
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Gaelynn Lea Jul 13
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🌺CHARMAIGNE🌺 22 Mar 18
My poor girly fractured her right arm already😪, at birth it was her left arm that was fractured, and two of her legs that were broken in the womb and healed the wrong way.❤️ hoping for a speedy recovery.❤️
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🌺CHARMAIGNE🌺 24 Mar 18
Amelia, my strong little girl.💝
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Charlotte Proud Feb 28
and I’ve just been out Running which I absolutely love. I’m one of 5,000 people in the UK with The condition is invisible and I’ve had around 50 fractures but I won’t let it stop me. 128 miles 🏃🏻‍♀️🏃🏻‍♀️ so far this year.
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Gemma Louise Anderson Jan 7
In love with my new hoodie! ❤️ Osteogenesis Warrior, It’s Not For The Weak 💪
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Sarah Feb 28
Happy rare disease awareness day!!
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PerfectlyImperfecta Nov 8
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Gemma Louise Anderson Dec 21
5 minutes till I go LIVE for the first time on Twitter! Any questions you want to ask about me then fire away! (No personal or rude questions please!) see you guys soon!! 👋❤️
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Allyson Entwistle Aug 30
Ben channeling his inner Bruno Mars! After 9 years, he upgraded from a red wheelchair to a red car and he was so excited!
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Gillette Children's Jul 11
Nicknamed “Chef Caleb,” Caleb Pence loves to cook everything from cake pops to his favorite, Beefy Biscuit Cups. But often, he’s cooking while in a wheelchair or with a cast. You see, Caleb has :
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Charlotte Proud Feb 18
Valentines 10k on Sunday. From looking at this photo you would never guess that I have a rare genetic condition that affects 1 in 15,000 people in the UK. Hard to believe initially at School I was discouraged from PE
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Rare Diseases Europe 28 Feb 18
At today's event held on the European Reference Network for rare bone diseases (ERN BOND) is presenting its white paper on diagnosis including results of a survey of patients that showed the diagnosis procedure can take up to 4 years.
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TOPaZ Trial Nov 25
is looking at whether a 24 month course of teriparatide followed by a single infusion of zoledronic acid reduces the number of fractures as compared with standard care. We're open now and looking for adults with to take part
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Lizzie Jan 27
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Mirini Kim, CPNP-PC Jul 14
Dr. Laura Tosi, orthopaedic surgeon and director of the bone health program at Children’s National Medical Center, discusses quality of life issues in individuals with .
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Kristal Nemeroff May 6
Today is Wishbone Day, a day to bring awareness to Osteogenesis Imperfecta (OI). My recently broken femur taught me that It’s important to try to love yourself, even all the broken parts.
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Aimee Castro Oct 29
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