OneSCDvoice archive
Explore reporting, meetings, people, education, community stories and resources from the original OneSCDvoice website.
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182 pages from 2022
Community stories
Real Stories From People Living With Sickle Cell Disease: Mimi
sickle cell · sickle · cell · Patient Stories
“When I’m in that moment of pain in the emergency room, I can’t even think for myself. The pain is debilitating and they’re asking me questions like, ‘Are you sure you have sickle…
Videos and visuals
SCDC Global Access to SCD Clinical Trials Webinar
Webinars
This webinar gathered clinical researchers, institutional officers, and other advocates to discuss the current state of sickle cell, ongoing clinical trials, and barriers to…
Videos and visuals
SCDC Webinar: Global Warriors’ Access, Challenges, and Experiences with Sickle Cell Research
Webinars
This is a webinar hoisted by SCDC. In honor of International Clinical Trials Day on May 20th, 2022, the Sickle Cell Disease Coalition (SCDC) hosted a webinar on "Global Warriors'…
Videos and visuals
Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research
Webinars
This webinar covers current evidence-based best practices and ongoing research designed to improve the care of patients with sickle cell disease in emergency departments.
Community content
Sickle Cell Disease in the Emergency Department: Confronting Barriers to Care
Blogs
Patients with SCD frequently have difficulty getting proper treatment when they arrive in the ED. One study found that they wait 25% longer to see a doctor in the ED than do other…
Education resources
Sickle Cell Disease Tips for Healthy Living/Emergency Guide: When to See the Doctor
Patient Education
It is very important that every person or family with a young child with sickle cell disease have a plan for how to get help immediately, at any hour, if there’s a problem.
Community stories
Love + Sickle Cell Trait (Feat. Abisola and Seyi Shof): An Episode of the Sickle Cell Podcast
sickle cell · sickle · cell · Community Interviews
For the month of July, we are bringing awareness to sickle cell trait. Abibat Oshiobugie Suleiman is the host for today's episode.
Community content
Sickle Cell Warriors Comic Book
books
Check out this first issue of The Sickle Cell Warriors. Follow along with the heroes as they watch out for Terrance and help him advocate for himself at school.
Community stories
Supporting My Daughter, a Sickle Cell Warrior
Caregiver Stories
Community stories
Cheat Codes: A Sickle Cell Podcast: Legends of Sickle Cell - Dr. Michael DeBaun & Shamonica Wiggins
sickle cell · sickle · cell · Community Interviews
Cheat Codes is a podcast for the sickle cell community that brings listeners a series of segments and interviews packed with critical education that patients and families need to…
Videos and visuals
Mental Health + Sickle Cell
Webinars
The first of the 3-part mini-seminar series on mental health sickle cell disease. Warriors were invited to share their experience with depression, anxiety, substance abuse…
News and meetings
Dream Teen Transition Program
Happenings
The Dream Teens Transition Program looks to empower young patients with sickle cell disease with the tools and information to successfully transition from pediatric to adult care