United to Conquer Sickle Cell Disease

SCDC Update


Celebrate Black History Month

Happy Black History Month! Throughout the month of February, the Office of Minority Health (OMH) at the U.S. Department of Health and Human Services (HHS) is celebrating Black History Month by highlighting the achievements of Black Americans and honoring the significant role and impact they have made on all facets of life and society throughout U.S. history. Check out OMH’s webpage on Black history and SCD to learn about the strides made within the sickle cell community here

NBSCL Press Release on Improving SCD Treatment 

The National Black Caucus of State Legislators (NBSCL), the United States’ top organization representing the interests of Black elected officials, prioritizes improvement in SCD as a top health care initiative and calls on state and federal lawmakers to improve data collection, quality care and access to new treatments for sickle cell. The Caucus is urging state and federal policymakers to focus on improving care for patients diagnosed with sickle cell disease. Read the Caucus’ new press release here.

AAP Talking to Your Children about Racial Bias Resource Page   

The American Academy of Pediatrics (AAP) Parenting Website HealthyChildren.org hosts the “Talking to Your Children about Racial Bias Resource Page,” which highlights strategies that parents can use to help their children challenge racial stereotypes and racial bias. Access the webpage here

Kids Conquering SCD Foundation, Inc. Highlights Warrior Stories of Hope 

Kids Conquering SCD Foundation, Inc. aims to provide education, awareness, advocacy, and outreach to improve the quality of life for individuals and families living with SCD and other hemoglobin disorders. The organization’s “Warrior Stories of Hope” webpage shares inspiring Sickle Cell Warrior stories and accomplishments. Learn more here

SCDAA Community Health Worker Training Registration Open    

The Sickle Cell Disease Association of America (SCDAA) will offer a virtual sickle cell disease community health worker training from March 14 to May 16, 2022, on Mondays and Wednesdays. The training consists of virtual lectures, 40 hours of field experience, online in-class assignments, homework, and a final exam that will cover the core competencies needed for community health workers with additional concentration in sickle cell disease. The training session costs $1,060 with a limited number of scholarships available. Applications are accepted until March 7, 2022. Learn more here

CZI Request for Applications (RFA): Two Patient-Partnered RFAs with Rare Disease Focus

The Chan Zuckerberg Initiative (CZI) invites collaborative teams with representatives from patient-led rare disease organizations and research teams to apply for funding for 4-year research projects aimed at advancing understanding of the fundamental science of rare diseases, like sickle cell. The overarching goal of these two new RFAs is to support interdisciplinary teams characterize the cellular mechanisms underlying rare inflammatory diseases, including possible identification of biomarkers and elucidation of disease pathways that will clarify disease stratification or identify therapeutic opportunities. Learn more here

NIDDK Funding Opportunity: Advancing Research on Mechanisms & Management of Pain   

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), has released a new funding opportunity, RFA-DK-22-005 titled: “Advancing Research on Mechanisms and Management of Pain for Diseases and Conditions within NIDDK Mission Areas (R01 Clinical Trial Optional).” This funding opportunity announcement invites broad investigator-initiated research projects proposing novel basic, translational, and clinical studies and efforts to develop new approaches to assess and treat pain for disorders within the NIDDK’s mission. Learn more and apply here

TA recent episode on hit TV series Shark Tank featured SCD Warrior Tim Samuel and his business partner Dwayne Walker, as they pitched their concept for Sparketh. Sparketh is an online learning platform that empowers young students to reach their creative potential through art. Sparketh offers unlimited access to 1000 online art lessons taught by talented mentors, with new courses offered weekly. Learn more here. 

GBT Releases Sickle Cell Misconceptions Fact Sheet 

Global Blood Therapeutics (GBT) released a fact sheet on sickle cell misconceptions to aid the SCD community. This resource emphasizes that helping educate others about SCD can make a big difference in overcoming stigmas and correcting misconceptions about the disease. Access the fact sheet here.  

CDC Releases Sickle Cell Screening Fact Sheet 

TThe Center for Disease Control (CDC) released a Sickle Cell Screening Fact Sheet. This fact sheet provides information on sickle cell trait screening and encourages individuals to understand their sickle cell status. Access the fact sheet here

CDC Steps to Better Health Toolkit  

The CDC released the Steps to Better Health Toolkit to aid the SCD community. This collection of tools and resources provides evidence-based guidance on caring for common complications experienced by individuals living with Sickle Cell Disease. Learn more here

Got Transition Publishes “A Family Toolkit: Pediatric-To-Adult Healthcare Transition”

Got Transition is a program of The National Alliance to Advance Adolescent Health that aims to improve transition from pediatric to adult health care using innovative strategies. Got Transition developed A Family Toolkit: Pediatric-To-Adult Healthcare Transition to better prepare youth and families for the transition to adult care. Learn more here

NHLBI Releases BioData Catalyst Resource 

The National Heart, Lung, and Blood Institute (NHLBI) recently released its BioData Catalyst Resource, a cloud-based ecosystem that provides tools, applications, and workflows in secure workspaces to support data analysis on a range of hosted datasets. The BioData Catalyst accelerates efficient biomedical research that drives discovery and scientific advancement, leading to novel diagnostic tools, therapeutics, and prevention strategies for diseases like sickle cell. Learn more here

FDA Issues Draft Guidance on Developing Non-Opioid Analgesics for Acute Pain

The National Heart, Lung, and Blood Institute (NHLBI) recently released its BioData The U.S. Food and Drug Administration (FDA) recently took new steps to promote the development of non-addictive alternatives to opioids in acute pain management. The agency issued draft guidance for companies developing non-opioid analgesics for acute pain lasting up to 30 days. Learn more here

ADRP Blood Donor Diversity Resources   

ADRP, an international division of ABC, has partnered with the Sickle Cell Disease Association of America (SCDAA) to highlight the need for blood donations from diverse donors to aid SCD warriors. The toolkit includes English and Spanish versions of social graphics, videos, and more. Learn more here

 Stand Out from the Inside Podcast Episode: “What is Sickle Cell Disease?”  

Podcast presented by Versiti aims to empower individuals to spread the word on the need for diverse blood products through donation and blood drives. Join host Edgar Daggett, Specialty Programs Marketing Associate at Versiti Blood Centers, and special guest James Griffin, author of “Breaking Silence, Living with Sickle Cell Anemia,” as James shares his battle with SCD, and some of the blood donation fears experienced in the Black and Brown community. Listen to the episode here

The Sickle Cell Podcast Episode: “Sickle Cell +The Workplace”    

The Sickle Cell Podcast touches on all things sickle cell related by sharing warrior experiences and providing sickle cell related education. Hosts Dr. Stephen Boateng and Cass Trimnell are joined by workplace diversity and inclusion expert Tayo Rockson, MBA to discuss tips and accommodations to navigate the workplace when living with SCD. Listen to the episode here

**SCD EVENTS**

SCAGO Annual General Meeting 

The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its Annual General Meeting to promote advocacy for evidence-based SCD policy within the government, schools, workplaces, and the healthcare systems. The SCAGO Annual General Meeting will take place virtually on February 12, 2022. Register to attend here

SCDC Global Access to Clinical Trials Webinar 

The Sickle Cell Disease Coalition (SCDC) will host a webinar on Global Access to Sickle Cell Research and Clinical Trials Webinar February 24, 2022. This program will include a panel of sickle cell researchers and providers from across the world who will provide an overview of their region’s current infrastructure and barriers to participate in clinical trials for sickle cell disease (SCD). This webinar is free and open to the public. 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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