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RareRising

@RareRising_Org

RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.

rarerising.org
Joined April 2021
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  • Followers186
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Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)Photo by RareRising (@RareRising_Org)
Join us on 9/9 to discuss “Building a Path to Successful Newborn Screening Implementation in Virginia.” Register at forms.cloud.microsoft/r/iCAz… #RareandReady #NewbornScreening
Image from Rare & Ready Coalition (@rare_ready)
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NEW LAW ALERT! @GovEvers has signed a bill allowing WI #Medicaid to opt into outcomes-based arrangements (OBAs). OBAs pave the way for access to innovative treatments! @RepEllenSchutt @RepDittrich @MaryFelzkowski @SenBallweg @Upequity_Org
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There are rare diseases, and then there are ultra rare diseases. Here's another fact about Barth syndrome. #FactFriday #BarthSyndrome
Image from Remember The Girls (@remember_girls)
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Have you started buying school supplies yet? Register for our August 16th Back-to-School #webinar today. epilepsyallianceamerica.org/…
Image from Epilepsy Alliance America (@AmericaEpilepsy)
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Reason 7: #MedicaidMatters because most of our nation’s sickest children get coverage through #Medicaid including children with a range of special health care needs and those with complex medical needs. Learn more: childrenshospitals.org/conte…
Image from Children's Hospital Association (@hospitals4kids)
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Here is a great way to show your support for equity in healthcare. Sign the CHES Foundation's SHEmophilia petition today! change.org/p/demand-equity-i…
Image from FAIR Time for Women Coalition (@fairtime4women)
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For Brain Awareness day four, we’re discussing the impact of spinal CSF leak on cranial nerves spinalcsfleak.org/brain-awar… #brainawarenessweek #becauseyourduramaters #spinalcsfleak
Image from Spinal CSF Leak Foundation (@spinalCSFleak)
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Congratulations to Lucy! Tune in tonight @Channel4 #RareDisease #ShowYourStripes #ThePiano
Channel 4 (@Channel4) profile pictureChannel 4
@Channel415 Feb 2023
This is the incredible moment Lucy, a 13-year-old who is blind and neurodiverse, played a highly-complex Chopin piece, leaving @MikaSounds and @Lang_Lang speechless. The Piano, presented by @ClaudiaWinkle, starts tonight at 9pm on Channel 4. Stream Free on All 4. #ThePiano
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RareRising retweeted
Lupus LEAP (@lupusLEAP) profile picture
Lupus LEAP@lupusLEAP28 Feb 2023
It’s Rare Disease Day! At RDDC's #RareDiseaseDay Reception last night, Taniesha Washington, @Upequity_Org said, “There are over 7K rare diseases worldwide. Why do we limit ourselves to speaking to just our own?” #RiseForRare #RareDisease #HealthEquity
Image from Lupus LEAP (@lupusLEAP)
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Welcome @Upequity_Org and Rare Disease Innovations Institute rdii.org/ to the expanding @Rare_Ready genetic and rare disease coaltion. We believe Medicaid should cover telehealth visits with out-of-state providers. We’re all in this together. #RareDisease
Image from Rare & Ready Coalition (@rare_ready)
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What’s one question you have always wanted to ask a medical professional?
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#anxiety #anxietydisorders #Mentalhealth #MentalHealthAwareness #mentalillness
Image from Mental Health Awareness (@ItzMentalHealth)
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Tomorrow starts the #seattlerarediseasefair ! You will not want to miss out on over 40 speakers from the rare disease community! Visit the website in our bio to see the full agenda and register! #RareDisease #seattlerare
Image from Rare Disease Innovations Institute (@rdii_org)
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With so much going on in the news these days, it's important to carve out time for some self-care. Your health depends on it!
Image from The XLH Network, Inc. (@XLH_Network)
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March is Autoimmune Awareness Month! ITP is an autoimmune condition characterized by low platelet counts. Learn more about ITP at pdsa.org/what-is-itp.
Image from PDSA ITP SUPPORT (@PDSA_ITP)
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Join REN in raising awareness of the impact of the epilepsies, including rare epilepsies, on Black Americans. More info at: bit.ly/AAEpilepsy #rareepilepsies #BlackHistoryMonth #rareepilepsynetwork
Image from Rare Epilepsy Network (@RareEpilepsy)
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#ChildrensMentalHealthWeek How to nurture a child’s mental health. #BePatient #BePresent #BelieveThemAndInThem #RareChildren #RareChildrensMentalHealth
Image from GoPI3Ks (Genetic Overgrowth PI3K Support) (@GoPI3Ks)
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RareRising retweeted
AAIDA (@MyAaida01) profile picture
AAIDA@MyAaida0125 Jan 2022
Join us TONIGHT from 7-8 pm for Living Well With Lupus: A Holistic Approach. AAIDA will host Tanya Freirich, MS, RD, CDN, CDCES to kick off our webinar series for 2022! #Lupus godoaaida.org/webinars/
Image from AAIDA (@MyAaida01)
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Replying to @WHO @DrTedros
"So far, more than 4 billion #COVID19 vaccine doses have been administered globally. More than 80% have gone to high- and upper-middle income countries, even though they account for less than half of the world’s population"-@DrTedros
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The #HDPulse Data Portal provides an ecosystem to characterize #HealthDisparities—and motivate action to reduce them. Explore this #NIMHD tool here. bit.ly/3qDaNlB
Image from Health Disparities (@NIMHD)
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