SCDC Update

Celebrate World Sickle Cell Awareness Day with SCDC theme: Knowledge is Power! 

World Sickle Cell Awareness Day is Saturday, June 19, 2021, and the Sickle Cell Disease Coalition (SCDC) is thrilled to celebrate with the theme: Knowledge is Power! In celebration of the day, the Coalition released a World Sickle Cell Awareness Day 2021: Knowledge is Power webpage. This webpage offers a collection of SCDC-produced resources that spread SCD education and awareness to a variety of audiences. Resources on the webpage include:

• SCD Therapy Fact Sheets
• Repository of Global SCD Educational Tools
• SCD Reading Lists
• Blood Donation Resources
• COVID-19 Resources

The webpage also includes sample social media messaging to help spread SCD awareness through various platforms. Celebrate the day by exploring the webpage and sharing these resources with your community.  

Sickle Cell 101 Launches Sickle Cell Studies

In honor of International Clinical Trials Day on May 20, 2021, Sickle Cell 101 launched Sickle Cell Studies—SCDStudies.com, a patient-friendly research platform. This platform is dedicated to helping all stakeholders in the sickle cell community identify, discuss, and learn about ongoing research on Sickle Cell Disease (SCD) and sickle cell trait globally.

ASH Updates Position on Sickle Cell Trait

In response to the recent New York Times investigation on deaths of people with sickle cell trait in police custody, the American Society of Hematology (ASH) submitted a letter to the editor and accompanying press statement denouncing the discriminatory and medically inaccurate citation of sickle cell trait as cause of death. Additionally, ASH released an updated position on sickle cell trait and echoes their call for more research and education.

SHM Releases SCD Implementation Guide

The Society of Hospital Medicine (SHM) recently released a SCD Implementation Guide to equip hospitalists and other hospital clinicians with the most optimal strategies for effectively treating SCD. This guide covers several components, including:

• Overview of Sickle Cell Disease
• Pathophysiology of Sickle Cell Disease
• Triage and initial medical management
• Pain management
• Creating individualized care plans

SHM also released two educational modules for hospitalists on the presentation of SCD and transitions of care for people with SCD. Access these learning materials here.

ASH Accepting Abstract Submissions for 63rd Annual Meeting

The abstract submission site for the 63rd ASH Annual Meeting is now open. This year’s meeting will feature the latest breakthroughs in hematology while connecting and convening the global hematology community. Submit an abstract electronically through ASH’s online abstract submission system by August 3, at 11:50 p.m. Pacific Time. Visit the abstract submission page to learn more.

CDC’s Sickle Cell Data Collection Program Announcement

The Sickle Cell Data Collection program determines the number of people living with SCD and monitors changes related to their health over time.  Recent program announcements are summarized below:

• World Sickle Cell Day: CDC is sharing SCD camp counselor stories and information about SCD summer camps ahead of June 19. Stay updated by following CDC’s National Center on Birth Defects and Developmental Disorders (NCBDDD) on Twitter at @CDC_NCBDDD.
• Newsletter: Subscribe to The Bloodline to stay in the know about SCDC activities, data, presentations, and more. The Spring issue has been made available here.
• Webinar: Stay tuned for a webinar about SCD and nutrition on Wednesday, July 28, 2021. Join the email list to receive announcements about upcoming webinars.

IASCNAPA Scholarship for Students Living with Sickle Cell

The International Association of Sickle Cell Nurses and Professional Associates, Inc. (IASCNAPA) is offering scholarships to assist individuals living with SCD attend an institution of higher learning in the United States. Applicants for IASCNAPA’s $1,500 scholarships must be enrolled in, or have been accepted by, a recognized and accredited post- secondary school, such as a college, university, trade school, or other institution of higher learning. Curriculum choice, age, gender, race, ethnic background, religion, and political affiliation will not be used in evaluating applications. A total of four $1,500 scholarships will be awarded. Interested parties may download the application at www.iascnapa.org.  

Visit the Cure Sickle Cell Initiative Resource Library

The Cure Sickle Cell Initiative is a collaborative, patient-focused research effort led by the National Heart, Lung, and Blood Institute (NHLBI) to identify safe and effective genetic therapies for SCD. The Initiative’s website includes a Resource Library with a wealth of information and tools on SCD and gene therapy, including animated informational videos, infographics, and conditioning documents. Visit to learn more about the science around SCD and gene therapy.

UPCOMING SCD EVENTS

SCAF World Sickle Cell Awareness Day Webinars

The Sickle Cell Aid Foundation (SCAF) is celebrating World Sickle Cell Awareness Day with a webinar series on various aspects of SCD in Nigeria. These webinars include:

• “Accessing Funding and Grant Opportunities” – **June 16, 2021 **
• “SCD - Policy Debate” – June 17, 2021
• “My Sickle Story - Building an Empire” – June 18, 2021

Register here.

ASH & ASH RC World Sickle Cell Awareness Day Livestream

Join ASH and the ASH Research Collaborative (ASH RC) for two special social media livestream conversations to celebrate the upcoming World Sickle Cell Awareness Day, a United Nations–designated day to spread awareness about SCD as a public health priority. The livestreams will take place June 17, at 12:00 p.m. EST (moderated by Dr. Wally R. Smith, with panelists Drs. Russell E. Ware and Titilope Fasipe), and at 2:00 p.m. EST (moderated by Dr. Sophie Lanzkron, with panelists Teonna Woolford and Shauna Whisenton). Follow ASH and ASH RC on social media so you don’t miss these special events! Access the livestreams using the channels below:

ASH: Twitter » Facebook » LinkedIn » Instagram »

ASH RC: Twitter » Facebook » Instagram »

Celebrate World Sickle Cell Awareness Day on June 19th by Joining the Shine The Light Campaign  

In honor of World Sickle Cell Awareness Day on June 19, 2021, the Sickle Cell Disease Association of America (SCDAA) and the Sickle cell Improvement across the North East ReGion through Education (SiNERGe) collaboratively developed the “Shine the Light on Sickle Cell” campaign. This campaign invites everyone to join with friends, family, neighbors, and other community members, as people around the nation and across the globe host and hold local gatherings to shine the light on SCD. Save the date and visit the Shine The Light website to learn about ways you can help spread SCD awareness with your community on June 19th! Click here to learn more.

Forum on Gene Therapy for Underserved Populations

The American Society of Gene and Cellular Therapy (ASGCT) is hosting a free, virtual event on Tuesday, June 22 from 12:30 p.m. – 5:00 p.m. EST focusing on gene therapy drug development for people with ultra-rare diseases and those in lower-income countries. ASGCT is gathering speakers from leading efforts in this space to present novel models, challenges, and solutions to advancing the development and access of these therapies in low-resource settings. View the full agenda and register here.

Advancing Gene and Cell Therapy in South Africa

ASGCT is hosting a virtual half day symposium for researchers in South Africa. The goal of the symposium is for U.S. and South African speakers with experience in clinical development to share their experiences and insights on factors to consider to successfully initiate clinical trials of gene and cell therapies in South Africa. The first symposium topic will explore monogenic therapies and SCD specifically. The symposium is free and will take place on June 29, 2021, from 9:00am – 12:30pm EST. Register here.

Support SCDAA at the 8th Annual Walk with the Stars

SCDAA will hold the eighth annual Walk with the Stars fundraiser, where participating teams and individuals can track their walk, run, dance or movement steps while raising funds to support the association in preventing the complications of sickle cell disease through awareness, education, advocacy and research. Walk with the Stars kicked off May 22, 2021 with a Facebook Live event and will culminate in a virtual Walk with the Stars celebration July 10 from 9:00 a.m. to 11:00 a.m. EST, recognizing participants’ steps and success. Learn more here.

SCD & COVID-19 INFORMATION AND RESOURCES

• SCDAA’s Medical and Research Advisory Committee Advisory Recommending the COVID-19 Vaccine for Individuals with SCD
• American Society of Gene and Cell Therapy’s Educational Resources on mRNA Vaccines for COVID-19
• SCDC’s SCD and COVID-19 Resource and Information Page