oneSCDvoice

Online Community and Digital Education Platform for those living with Sickle Cell Disease. Come browse our hand-picked content & join our community!

[oneSCDvoice @oneSCDvoice]

Join SCDAA for Mindful Mondays—designed to introduce & promote the practice of mindfulness and well-being to sickle cell warriors, their caregivers and to all, through breathwork, affirmations and mindfulness techniques: https://t.co/ZRQcirv58x
#SickleCell ​#SickleCellDisease

[oneSCDvoice @oneSCDvoice]

Treatment for SCD with the gene editing technique called CRISPR transformed Victoria Gray's life. She's telling her story at a scientific summit in London. Find out why genetic engineering experts are spotlighting her case: https://t.co/vop0DawGJh
#SickleCell ​#SickleCellDisease

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Tevin and Akilah Coleman welcomed their twins, Nazaneen and Nezerah, in 2017, and found out about Nazaneen's unique health needs when she was just an infant. Read their sickle cell story: https://t.co/EftHEVRNuQ
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

Our latest community poll asks you to select the one SCD challenge that has the biggest impact on your everyday life. Please take a moment to respond: https://t.co/NGVSxazAZB
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

In honor of #RareDiseaseDay, we are sharing Tristan's story. Read to learn how Tristan has coped with SCD and become involved in patient mentoring and advocacy: https://t.co/QOMsCWuTOG
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

Celebrate Rare Disease Day by joining NIH virtually or in-person on February 28th. The free event features panel discussions, rare disease stories, exhibitors and scientific posters. Register & learn more: https://t.co/QA5Aw026rw
#Amyloidosis #oneAMYLOIDOSISvoice #RareDiseaseDay

[oneSCDvoice @oneSCDvoice]

The Shofs talk about their love story with SCT, the challenges they faced with telling their families, and weighing the options for marriage and children that led them to their IVF journey. Listen now: https://t.co/mYfDKogkaL
#SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

Chris lives with sickle cell disease and started his own initiative that aims to create conversation about SCD. Learn what it was like for him growing up and listen as he brings together some of his friends to chat about SCD: https://t.co/8dsanqE4AG
#SickleCell ​#oneSCDvoice

[oneSCDvoice @oneSCDvoice]

Researchers are trialing lab-grown blood transfusions. Learn about a new milestone in the long journey of developing lab-grown red blood cells and next research steps before clinical use: https://t.co/zYMniQuOIo
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

This webinar from the Sickle Cell Community Consortium focuses on blood transfusion basics: risks & benefits, potential complications, and more. Watch now: https://t.co/dGTJDM3LFU
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

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Check out this timely information from MARAC for those with SCD and their caregivers. Learn why those with SCD should be worried about the flu, what can be done to prevent it, and what to do if you think you have it: https://t.co/ddP8yH7cJ0
#SCD #SickleCell #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

With the new year many choose to focus on wellness. Are you aiming to make strides in your health? These tips from the National Heart, Lung, and Blood Institute will help you stay as healthy as possible: https://t.co/I7UBD1tqiT

[oneSCDvoice @oneSCDvoice]

Happy Holidays from all of us at oneSCDvoice. We hope your holidays are filled with joy and laughter through the New Year.
#HappyHolidays #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

Are you traveling this holiday season? Be sure to read these travel tips from the Center for Disease Control that will help you prepare to have a safe and enjoyable trip: https://t.co/1NJMbwcE0Y
#SCD #HolidayTravel #SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

We want to hear from you. We hope to better understand the challenges of navigating sickle cell disease care as a young person transitioning to adulthood, from the patient and/or caregiver perspective: https://t.co/DmbdXLomzy
#SCD #SickleCell ​#SickleCellDisease #oneSCDvoice

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The 64th American Society of Hematology Annual Meeting and Exposition is scheduled to take place December 10-13, 2022 in New Orleans, Louisiana and as a virtual meeting. Register now: https://t.co/FI3ohhrsCK
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

This new 3-part series focuses on supporting patients, caregivers and community members impacted by sickle cell disease. Hear from the people living with SCD and experts who work every day to improve their lives. Listen now: https://t.co/5axx2AJTem
#SickleCell #oneSCDvoice

[oneSCDvoice @oneSCDvoice]

This community conversation touches on marriage, unconditional support, loving someone with a chronic illness and relocation. Check out this Vitamin SC3 episode, powered by the @SCCConsortium: https://t.co/f3zoRGKKi5
#SCD #SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

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Want to understand more about bone pain and sickle cell disease? This community conversation is centered around understanding osteonecrosis and the research behind emerging treatment. Listen now: https://t.co/yMznbgqvrQ
#SCDAwareness #SickleCell ​#SickleCellDisease #oneSCDvoice

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"I think being a sick kid is what sparked my creativity. It was my only outlet. I was never out of the hospital or in school long enough to really make friends." Listen to this recent Vitamin SC3 podcast, which explores creativity: https://t.co/URbALCkIgc
#SickleCell #oneSCDvoice