One Rare

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One Rare

One Rare

@One_Rare_

Our mission is to improve the lives and advance the futures of young adults living with rare conditions through education, recreation, and peer support.

Newton, MA Katılım Eylül 2019
96 Takip Edilen248 Takipçiler
One Rare
One Rare@One_Rare_·
Are you a young adult living with #rare between 18-35? Meet like minded peers, learn unique crafts, and get informed to advocate for you! Reg ends 8/1 - click “join us” to apply and agenda for our speaker lineup. #rardisease #patientdriven onerare.org
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Neena Nizar
Neena Nizar@NeenaNizar·
How much does ur advocacy affect your personal n professional life? I'm finding my persistence n resilience labeled "threatening" n "agressive" in general non-adv related meetings where lives r not at stake. How does one reconcile the two lives? @livinlavidalopo #alwaysanadvocate
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Neena Nizar
Neena Nizar@NeenaNizar·
No chance of breaking my wheelchair as the ONLY virtual rare disease conference doesn't require anyone to leave the comfort of his/her home! How cool is that! Join me at #TheRairFair @MyCityMed as we chat about the challenges of translational research.
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One Rare
One Rare@One_Rare_·
Heard at #2019ggsummit: No one’s disease is more or less impactful or debilitating and that’s what brings us all together.”
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Rare Advocacy Movement
Rare Advocacy Movement@RareAdvocacy·
RAM member @GayGrossman of @adcy5 is sharing insights on navigating private, state & federal programs for health & education based on her experience with her daughter who is an adult living with a #RareDisease. #2019GGSummit
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@livinlavidalopo @_OurOdyssey_ @RarePOV @LillyStairs @project_sleep @NarcolepsyNtwrk @onnofaber @Srotberg15