United to Conquer Sickle Cell Disease

SCDC Update, November 2020


Help Spread the Word about Blood Donations as U.S. Blood Supply Declines

The blood supply in the United States is critically low and the majority of the country’s blood centers are reporting significant declines in their blood collections. As the nation confronts new surges of COVID-19 cases, AABB, America’s Blood Centers and the American Red Cross are joining together to urge eligible individuals to make and keep an appointment to donate blood now. The Sickle Cell Disease Coalition (SCDC) is committed to spreading awareness about the importance of giving blood to ensure there is sufficient supply for individuals living with sickle cell disease (SCD) for whom transfusions are lifesaving and prevent complications.  You can help ensure those living with SCD and other have access to transfusions to stay healthy by donating  blood or raising awareness by sharing this message via social media.

NHLBI Hope for Sickle Cell Disease Challenge

The National Heart, Lung, and Blood Institute (NHLBI) is hosting a Hope for Sickle Cell Disease (SCD)  Challenge to improve awareness about \SCD and address the associated myths and stigmas.  This Challenge encourages college and graduate students to develop innovative information dissemination tools, instruments, or devices that help spread evidence-based information about SCD, so that people living with the disease can live better, healthier lives. The NHLBI will award up to a total of $50,000, and up to three winners will be selected.  

  • The registration period ends on February 26, 2021 at 11:59 p.m. ET 
  • The submission period ends on March 26, 2021 at 11:59 p.m. ET

Click here for additional information. 

Program Rebrand Provides Clarity and Hope for SCD Community

Clinical trials can offer hope for people with sickle cell disease (SCD), but it can be difficult for families to understand and navigate their options. The recently renamed Be The Match Jason Carter Clinical Trials Search & Support is still focused on helping patients with blood disorders explore clinical trials.  The program offers: 

  • One-on-one support – clinical trials navigators can help answer questions and do personalized trial searches 
  • Online search tool – search for clinical trials and find easy-to-read trial descriptions  
  • Financial assistance program – qualified individuals can get a grant to help pay for travel costs associated with participating in a clinical trial 
  • Education – learn about the clinical trial process, watch videos about new treatments and find patient stories

To learn more, Contact the Be The Match team by phone at 1-888-814-8610, by email at contact@ctsearchsupport.org or at www.ctsearchsupport.org

***SCD AND COVID-19***

SCD and COVID-19 Resources

The following links are frequently updated with timely information for the community and providers.

***UPCOMING SCD EVENTS***

One Day Left Until the Start of the 7th Annual Sickle Cell Disease Patient & Family Educational Symposium 

The 7th Annual Sickle Cell Disease Patient & Family Educational Symposium starts tomorrow, November 19 through November 22.  The 2020 program will be entirely digital and hosted by the credentialed partners of the Sickle Cell Consortium (SCC).  This year the program will be different, and the Convention will focus on a series of Community Conversations featuring Warrior Patients and Caregivers, with the theme “Citizen Scientist: Harnessing the Power of the Patient and Caregiver Voice.”  Highlights of the Symposium include: 

  • Partner Digital Booths 
  • Community Conversations 
  • Healthy Living – Caregiver Conversations 
  • Children’s Track 
  • Young Adult Track 
  • Men’s Track ….and so much more

Click here to learn more and register. 

Register for Webinar on SCD and COVID-19 Management in the Emergency Department

The American Society of Hematology, American College of Emergency Physicians (ACEP), and the Emergency Department Sickle Cell Care Coalition (EDSC3) are co-hosting a Webinar on Sickle Cell Disease (SCD) and COVID-19 Management in the Emergency Department (ED) on Friday, November 20, 2020 from 11:00 AM to 12:00 noon ET.  The webinar will provide education on how to evaluate and treat individuals living with SCD presenting to the ED with SCD-specific considerations. The program will be chaired by Jeffrey Glassberg, MD, from Mount Sinai, and the following topics will be addressed: 

  • COVID-19 Care & Medical Considerations for Individuals with SCD in the ED 
  • ED Patient Flow & Operational Considerations 
  • Pain Management for Individuals with SCD in the ED During the Pandemic
  • Providing Social & Emotional Wellness for Individuals with SCD During the Pandemic 

Register here.

Mini-Seminars on Cognitive Challenges in SCD: Executive Function and Beyond 

Cayenne Wellness Center is hosting three mini-seminars about the Brain and Executive Function in Sickle Cell Disease (SCD), with separate talks that will focus on the medical (neurological/developmental), neuropsychological, behavioral, and educational aspects of the neurocognitive complications of SCD.  The goal of the program is to help raise awareness about the neurocognitive challenges associated with SCD, so that individuals with SCD, their parents, and families will be able to recognize these issues earlier in life, actively discuss their concerns with their providers in an informed manner, and advocate for necessary treatments and services. The first of the three seminars will take place on Saturday, November 21 from 2:00 p.m. to 3:30 p.m. ET.  For additional information and to register, click here

Highlights of SCD Content at ASH Annual Meeting and Exposition 

The 62nd American Society of Hematology (ASH) Annual Meeting & Exposition is quickly approaching as an all-virtual event on December 5-8, 2020. The meeting provides an invaluable educational experience and an opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology, including sickle cell disease (SCD). The following is a list of SCD-specific programming.   

Click here to search for sickle cell-focused Oral and Poster Sessions.  Additional information about the program, meeting, registration and exhibits, is available here.

Spread the Word

The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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