oneSCDvoice

oneSCDvoice is an online community that educates, supports and empowers those impacted by sickle cel Join now for free! Come on in and meet us!

A sickle cell community tailored to you
oneSCDvoice is an education platform that gathers credible disease and lifestyle information and empowers people impacted by sickle cell disease. Working Groups of leaders in SCD advocacy and medicine review valuable information to create a "Trusted Resources" library that are integrated into conversations in the SMART Social Wall.

04/25/2023

Join the SCDAA as Dr. Marjorie Dejoie Brewer virtually leads Mindful Mondays—a weekly series of 5-minute sessions, designed to introduce and promote the practice of mindfulness and well-being to sickle cell warriors, their caregivers and to all, through breathwork, affirmations and mindfulness techniques.
Try a session: https://loom.ly/nmuw2Is

04/19/2023

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. Listen now: https://loom.ly/ZYf4wXk

04/11/2023

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://loom.ly/xGi30Ac

04/05/2023

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; all responses are anonymous and could help to improve care for the sickle cell disease community. Vote now: https://loom.ly/oxNsTFE

02/28/2023

In honor of , we are sharing Tristan's story. Read to learn how Tristan has coped with SCD and become involved in patient mentoring and advocacy: https://loom.ly/6D87tX0

02/22/2023

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://loom.ly/tkLfcc0

02/14/2023

Abisola and Seyi Shof 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 with genetic testing. Listen now: https://loom.ly/5vAte5M

02/08/2023

Chris lives with sickle cell disease and started his own initiative, The Sound of Sickle, that aims to create a conversation about the condition. Learn what it was like for Chris growing up and see what it's like when he brings together some of his friends to chat about SCD: https://loom.ly/JwkEHHM

01/25/2023

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://loom.ly/JSHYNr4

01/18/2023

This webinar from the Sickle Cell Community Consortium focuses on blood transfusion basics: risks & benefits, potential complications, and more. Watch now: https://loom.ly/PcnQvyc

01/11/2023

Check out this timely information from MARAC for people with sickle cell disease (SCD) and their caregivers. Learn why people with SCD should be worried about the flu, what can be done to prevent it, and what you should do if you think you have it: https://loom.ly/54SmQhg

01/04/2023

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://loom.ly/bCENBdo

12/21/2022

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

12/19/2022

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://loom.ly/qEhb61I

12/13/2022

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. Take the survey: https://loom.ly/0f7y0mo

10/26/2022

This new 3-part series is brought to you by Sickle Cell Disease Association of America, Inc. and Bluebird Bio and focuses on supporting patients, caregivers and community members impacted by sickle cell disease. Throughout each episode, you will hear from the people living with SCD and experts who work every day to improve their lives. We’ll learn about the lifelong care, interpersonal relationships, and medical disparities that people with SCD live with and what we can do to improve them. Listen now: https://loom.ly/VFQ2BgQ

10/19/2022

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 Sickle Cell Community Consortium https://loom.ly/g-CBS0A

Address

606 Post Road East, #397
Westport, CT
06880

Website

http://www.onescdvoice.com/

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Our Mission

oneSCDvoice was created to provide a Sickle Cell Community tailored to you!

Get support, connect with others like you, learn more about Sickle Cell Disease while being part of a community dedicated to accelerating treatment & improving health outcomes. oneSCDvoice is an online community and education platform that gathers credible disease and lifestyle information and empowers people impacted by sickle cell disease. Working Groups of leaders in SCD advocacy and medicine review valuable information to create a "Trusted Resources" library that is then integrated alongside relevant conversations taking place on the SMART Social Wall, where our community truly flourishes! Join now for free! Come on in and meet us!