United to Conquer Sickle Cell Disease

SCDC Update


Honoring Untold Stories of Sickle Cell Disease

Join us in honoring the work of Dr. Alex Kumar, a global health physician and photographer, sharing images and stories of challenge and inspiration from around the globe to raise awareness for sickle cell disease (SCD) and help change how the world sees it. Dr. Kumar’s work illustrates how people with the condition overcome challenges, inspire hope, and find motivation. Learn more about these inspiring SCD warrior stories here

NASCO Women & SCD Symposium Recording

In honor of International Women’s Day, the National Alliance of Sickle Cell Organizations (NASCO) organized its 2nd national multi-stakeholder virtual symposium under the theme, “highlighting unique challenges faced by women living with SCD in India.” Watch a recording of the symposium here. 

New Publication on Fertility, Equity, & SCD  

Sickle cell providers and advocates, Dr. Charles T. Quinn and Dr. Russell E. Ware, recently published an editorial in Blood entitled, “Reproductive Equity: Preserve the Reserve.” This commentary is based on a recent study by Dr. Lydia Pecker, et al., which investigates the reduced ovarian reserves of women with SCD and the need for more equitable access to fertility assistance. Learn more here

Coming Soon: ASH’s “Bringing Sickle Cell Disease to Life” Podcast Series

The American Society of Hematology (ASH) is launching a new podcast series entitled, “Bringing Sickle Cell Disease to Life”! Over the course of three seasons, the podcast will explore the past, present and future of sickle cell with leading experts in the field, including researchers, physicians and individuals living with the disease. The podcast series is hosted by Dr. Wally R Smith, Florence Neal Cooper Smith Professor of Sickle Cell Disease School of Medicine, Division of General Medicine, Virginia Commonwealth University. Listen to the episode 1 trailer and subscribe to the podcast series here

SCDC Global Access to Sickle Cell Clinical Trials Webinar Recording   

Last month, the Sickle Cell Disease Coalition (SCDC) hosted a webinar on Global Access to Sickle Cell Clinical Trials, which featured the efforts and perspectives of clinical researchers and institutional advocates from around the world. Access the webinar recording here

ASH Research Collaborative’s Pilot SCD Learning Community 

The ASH Research Collaborative (ASH RC) SCD Learning Community aims to profoundly improve the life course and quality of life of individuals living with SCD. This high priority effort includes SCD experts in the design and implementation phases. These experts include people living with sickle cell, caregivers, clinical researchers, psychologists, quality improvement specialists, and implementation scientists, to advance multidisciplinary learning network and improve outcomes. This national initiative will use longitudinal data for quality improvement, research, and innovation in sickle cell care. Learn more about the ASH RC SCD Learning Community here

Bluebird Bio’s “We Can Change SCD Brochure” 

Bluebird Bio released it’s “We Can Change SCD” brochure to aid the sickle cell community. The brochure notes that treating SCD is more than just treating acute complications. Today, treating SCD means seeing the whole person and considering lifelong goals. Access the brochure here

SCAGO’s COVID-19 Hub 

The Sickle Cell Awareness Group of Ontario (SCAGO) created its COVID-19 Hub to help keep the SCD community safe, healthy, and informed with the latest information and resources on COVID-19. This webpage highlights FAQs, webinars, and the SCAGO COVID-19 expert team. Learn more here

Sick Cells’ Project SCoviD Webpage

Sick Cells leads a consortium of five SCD community-based organizations (CBOs) to continue bringing medically reviewed information on COVID-19 and sickle cell to the SCD community. Follow Project SCoviD on Facebook or Instagram to access up-to-date information, watch live interviews with experts, and learn about how COVID-19 continues to impact the SCD community. Learn more here

NHLBI’s “Sickle Cell Milestones in SCD Research & Clinical Progress” Toolkit

The National Heart, Lung, and Blood Institute (NHLBI) released its “Milestones in SCD Research & Clinical Progress” toolkit. NHLBI-supported research over the past several years continued to advance the understanding of SCD and improve clinical care. Access the toolkit here. 

ASH’s International Outreach Initiative (IOI) is Accepting Applications!

Since 1999, the American Society of Hematology (ASH) has distributed educational materials to hospitals and universities in low-resource settings through its International Outreach Initiative (IOI). The goal of the IOI is to help address hematology-related needs by providing access to a wealth of educational materials related to hematologic research, practice, and training. Learn more about the IOI program and how to apply here. 

Novartis’ “Pediatric to Adult Care Transition” Toolkit

Novartis released a “Pediatric to Adult Care Transition” toolkit to help young SCD warriors navigate the transition to adult care. This toolkit provides the SCD community with easy access to useful tools for emotional support, physical wellness, and practical assistance. Access the toolkit here. 

CDC’s “Get Screened to Know Your Sickle Cell Status” Fact Sheet 

The Centers for Disease Control and Prevention (CDC) released a “Get Screened to Know Your Sickle Cell Status” fact sheet. This resource provides information on the screening process for sickle cell trait (SCT) including why individuals should be screened as well as a screening timeline. Learn more here. 

Bluebird Bio’s Understanding and Addressing the Complications of SCD” Fact Sheet

Bluebird Bio released their “Understanding and Addressing the Complications of SCD” fact sheet to aid the sickle cell community. This resource highlights the unpredictable complications of SCD and its start with a genetic trait. Learn more here. 

APHA’s “Advancing Racial Equity” Guide  

The American Public Health Association (APHA) released the “Advancing Racial Equity” guide. Primarily designed for public health students and professionals, this guide can be used by anyone interested in having meaningful discussions about racism and racial equity. This resource was designed to highlight the connection to health inequities in the United States. Learn more here

New Article on SCAGO & SCD Advocacy in Canada  

The Sickle Cell Awareness Group of Ontario (SCAGO) was recently profiled in the Healthing publication to highlight the intersection of sickle cell treatment and racial discrimination, as well as SCAGO’s history, mission, and funding received from the public health agency of Canada. Read the article here

Centering Health Equity Podcast Episode: “The Physician’s Role in Advancing Health Equity”   

The Centering Health Equity Podcast released an episode on “The Physician’s Role in Advancing Health Equity” featuring Dr. Uche Blackstock and her sister, Dr. Oni Blackstock. This podcast episode highlights the need to create a safe environment where unconscious biases can be recognized and discussed, so that physicians accept their unique opportunity to improve health outcomes among communities of color. Listen to the episode here

**SCD EVENTS**

Sickle Cell Disease Conference for the People 2022 

Cayenne Wellness Center will be hosting its Sickle Cell Disease Conference for the People on March 19, 2022. The conference aims to educate attendees on pathophysiology, complications, management, and FDA approved treatments for sickle cell disease. Register to attend here

2022 Sick Cells Annual Policy Forum  

Sick Cells will be hosting its 2022 Sick Cells Annual Policy Forum from March 22 to March 23, 2022. This event will include advocacy workshops and training sessions to equip advocates with tools for state and federal policy efforts. Learn more here

2022 St. Jude’s Sickle Cell Disease Symposium: What’s New with Transplant and Gene Therapy?

St. Jude’s Children’s Research Hospital will be hosting its 2022 Sickle Cell Disease Symposium, “What’s New with Transplant and Gene Therapy?” on March 24, 2022. This symposium will focus on topics such as: understanding new technologies related to hematopoietic stem cell transplantation and gene therapy (HSCT/GT) research, multidisciplinary collaborations among HSCT/GT experts, and the importance of including patients in the process of HSCT/GT research. Learn more here

3rd Annual SCCAPE Conference 

The Virginia Commonwealth University (VCU) SCD Program and VCU Health Continuing Education are holding the 3rd Annual Sickle Cell Care Coordination for Achieving Patient Empowerment (SCCAPE) Conference. This virtual event will take place from March 29 to April 1, 2022. The conference will enhance attendees’ knowledge, skills, and attitude towards assessment, care coordination, medical management, and more using a person-centered approach for treatment adherence in patients with SCD to improve their quality of life. Save these dates on your calendar and keep posted on theSCCAPE website for updates on the 3rd annual conference.

1st GASCDO Global Conference: The Future of Sickle Cell Care in a Changing World 

The Global Alliance of SCD Organizations (GASCDO) is hosting its first global conference from May 20 to May 21, 2022, in Accra, Ghana. The conference’s theme is, “The Future of Sickle Cell Care in a Changing World.” Save the date on your calendars and email ceo@globalscd.org for more information. 

4th GSCDN Global Congress on SCD 

The Global Sickle Cell Disease Network (GSCDN) is holding the 4th Global Congress on Sickle Cell Disease. The event will take place from June 16-18, 2022, in Paris, France. The Congress will bring together sickle cell disease (SCD) stakeholders from various sectors, including clinicians, scientists, patients, and more to catalyze discussions around the achievements and challenges in the diagnosis, treatment and care of people living with SCD globally, as well as the prospects for further progress. Learn more here

2022 NHLBI Annual SCD Research Meeting  

The NHLBI Division for Blood Diseases and Resources (DBDR) is planning its Annual SCD Research meeting as a hybrid event from August 8 to August 10, 2022. Save the date and look out for more information to come! 

**SCD & COVID-19 RESOURCES** 

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