SCDC Update
Continue Celebrating World Sickle Cell Day with the SCDC & Help Spread Trait Awareness!
World Sickle Cell Day is observed on June 19th every year to increase knowledge and awareness about sickle cell disease (SCD) to the global public. This year, the Sickle Cell Disease Coalition (SCDC) focused on disseminating information about sickle cell trait (SCT), its evolution, important health considerations, current societal implications, and how the SCDC’s SCT Task Force is addressing these issues. Learn more about SCT and access a collection of evidence-based, community-centered resources developed by SCDC members via the new SCT webpage and SCT Fast Facts Sheet. Learn more here.
ASH Sickle Cell Trait Position Statement
Several years ago, the American Society of Hematology (ASH) released a position statement on sickle cell trait (SCT). The statement expressed that it is medically inaccurate to claim sickle cell crisis as the cause of death based solely on the presence of sickled cells at autopsy. SCT rarely causes sudden death without the presence of another inflicted trauma. Well-controlled studies on collapse due to exertion have produced no evidence to prove SCT as a cause of death. Studies that have cited SCT as a sole cause of death or major contributor should be viewed with skepticism. Learn more here.
SCDAA World Sickle Cell Day 2023 / Shine the Light on Sickle Cell Campaign Webpage
The Sickle Cell Disease Association of America (SCDAA) World Sickle Cell Day 2023 webpage provides background information on this international awareness day and highlights events happening across the nation to raise SCD awareness throughout June, such as its Shine the Light on Sickle Cell campaign. Learn more here.
CDC World Sickle Cell Day Webpage
The Centers for Disease Control and Prevention’s (CDC) World Sickle Cell Day webpage provides background information on SCD and features resources about emergency care for people living with SCD. The webpage also highlights the experiences of people with SCD. Learn more here.
GANSID World Sickle Cell Day 2023 Toolkit
The Global Action Network for Sickle Cell and Other Inherited Blood Disorders (GANSID) showcased member organizations and their activities for World Sickle Cell Day 2023. GANSID’s toolkit compiled graphics that can continue to be used to spread awareness and to start community conversations about sickle cell. Learn more here.
NHLBI Programs & Resources for World Sickle Cell Day
The National Heart, Lung, and Blood Institute (NHLBI) offers a variety of programs to improve outcomes for individuals living with SCD. Visit their webpage to learn about the Cure Sickle Cell Initiative, Blood Diseases & Disorders Education Program resources for community members, study enrollment opportunities for people living with SCD, funding opportunities for investigators, and more. Learn more here.
WHO Article: “World Blood Donor Day 2023: Give Blood, give plasma, share life, share often”
World Blood Donor Day is observed by the World Health Organization (WHO) on June 14th each year and influences action toward achieving universal access to safe blood transfusion. This year’s campaign focused on supporting patients who require life-long transfusion support and emphasized the importance of giving blood and plasma regularly to sustain the supply of safe blood worldwide. Learn more here
AABB Locator Tool: WheretoDonateBlood.org
The Association for the Advancement of Blood and Biotherapies (AABB) web page titled, WheretoDonateBlood.org, helps individuals find their nearest blood donation site to aid patients in need of transfusions, including SCD warriors. Learn more here.
IASCNAPA SCD Nursing Bootcamp Accepting Applications (Closes 7/01 /23)
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) SCD Nursing Bootcamp aims to promote nursing excellence nationally and globally utilizing a train the trainer model. This training will be held from October 30 - November 3, 2023, at the University of Tennessee Health Science Center (UTHSC) College of Nursing. Program applications will be accepted through July 1, 2023. Learn more here.
IASCNAPA SCD Warrior College Scholarship Program (Closes 7/01/ 23)
IASCNAPA established a college scholarship program to assist U.S. SCD warriors in attaining higher education. 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, or trade school. Scholarship applications will be accepted through July 1, 2023. Learn more here.
SCDAA 2023 National Abstract Competition
The Sickle Cell Disease Association of America (SCDAA) encourages researchers, community-based organizations, physicians, nurses, social workers, and any individuals working on behalf of people living with SCD and their families to submit their work for the opportunity to present at the 51st Annual SCDAA National Convention in October 2023. Abstracts will be accepted through July 17, 2023. Learn more here.
Fox Carolina Article: “DHEC to Launch Voluntary Sickle Cell Disease Registry”
This article highlights new bipartisan legislation signed by South Carolina Governor Henry McMaster to establish a voluntary SCD registry in South Carolina. The South Carolina Department of Health and Environmental Control (DHEC) plans to have the SCD registry running later this year. Learn more here.
BBC Article: “Kenya Sickle Cell: Fighting to dispel the myths around the disease”
This article by the British Broadcasting Company (BBC) explores the great impact of SCD in Tanzania, as well as efforts made to improve care and increase education about the causes of sickle cell at the community-level. Grassroots campaigns for treatment access led to the opening of a hemophilia and sickle cell clinic in the town of Taveta, where 1 in 4 individuals live with SCD. Learn more here.
Business Line Article: “Collaboration, Key to Eradicating Sickle Cell Anemia”
This article by Business Line discusses the role of frontline healthcare workers in tribal communities throughout India and the need to bridge information gaps to better manage sickle cell care at the community level. Learn more here.
Sickle Cell Disease News Article: “New Assistance Fund Program Will Aid Underserved SCD Patients”
This article highlights a new financial assistance program to cover out-of-pocket medical expenses for individuals living with SCD. This program was launched by The Assistance Fund (TAF) to cover copayments, health insurance premiums, and genetic testing for SCD warriors who are underinsured and face high health-related costs. Learn more here.
JAN Webpage: “Job Accommodations & Compliance: Sickle Cell Anemia”
The Job Accommodation Network (JAN) offers a webpage highlighting key information for SCD warriors, including how a SCD diagnosis qualifies under the Americans with Disabilities Act, workplace accommodations, and more. Learn more here.
NIH U24 Funding Opportunity: Research Network to Promote Multidisciplinary Study of SCD Pain
The National Center for Complementary and Integrative Health (NCCIH) released a new funding opportunity to support a research network that promotes multidisciplinary mechanistic and translational studies of SCD pain. This network is expected to develop compelling research frameworks and model systems that will support interdisciplinary collaborations; initiate pilot projects to test novel mechanistic hypotheses in the high-priority research areas and develop novel technologies and methodologies to study pain in the organ(s) typically impacted by SCD. Learn more here.
Congressional Hearing on Federal SCD Program
On Wednesday, June 14, Alexis A. Thompson, MD, MPH (Children’s Hospital of Philadelphia), testified at a U.S. House of Representatives Energy & Commerce Subcommittee on Health hearing on legislative proposals to provide access to care for patients and support research for rare diseases. Among the proposals discussed at the hearing was the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884), sponsored by Representatives Michael Burgess (R-TX), Buddy Carter (R-GA), and Danny Davis (D-IL). This important legislation reauthorizes the Sickle Cell Disease Treatment Demonstration Program (TDP) administered by the Health Resources and Services Administration (HRSA). Dr. Thompson’s testimony focused on the program’s goals of increasing the number of clinicians and other health professionals knowledgeable about the care of sickle cell disease (SCD), improving the quality of care provided to individuals with SCD, and improving care coordination with other providers. Dr. Thompson also urged the Subcommittee to support H.R. 1672, the Sickle Cell Disease Comprehensive Care Act. Learn more here.
**UPCOMING SCD EVENTS**
SCDAA Masterclass Speaker Series: “Gene Therapy: A Journey Forward” (6/22/23)
In the spirit of World Sickle Cell Day, SCDAA continues its commitment to raise awareness with the launch of a new masterclass speaker series on June 22. Hear top experts discuss trending topics from the perspective that a potential cure and new breakthrough therapies are on the horizon. The June masterclass is on Thursday, June 22, 2023, at 3 PM and will feature a discussion on the role of gene therapy in the sickle cell journey. Register to attend here.
Martin Center Sickle Cell Initiative 27th Annual Sickle Cell 5k Walk/Run (6/24/23)
The Martin Center Sickle Cell Initiative will hold its 27th Annual Sickle Cell 5k Walk/Run on Saturday, June 24, 2023, at Riverside Park in Indianapolis, Indiana. Register to attend here.
Save the Date: SCCC 10th Annual Warrior’s Convention
The Sickle Cell Disease Community Consortium (SCCC) will hold its 10th Annual Warrior’s Convention in July 2023. This event will be hosted by a partnership of sickle cell CBOs, patients, caregivers, and advisors, and aims to empower the SCD community. Stay tuned for more information to come!
Save the Date: SCDAA’s Walk with the Stars (8/12/23)
The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its Annual Hope Gala on June 17, 2023. This event will bring a variety of stakeholders together to raise awareness and funds for SCD. Save the date and stay tuned for more information!
Save the Date: NHLBI Annual Sickle Cell Disease Meeting (8/14/23-8/16/23)
The National Heart, Lung, and Blood Institute (NHLBI) will hold its Annual Sickle Cell Disease Meeting from August 14 – August 16, 2023. Save the date and stay tuned for more information!
Save the Date: SCDAA Annual National Convention (10/11/ 23-10/14/23)
The Sickle Cell Disease Association of America (SCDAA) will hold its Annual National Convention from October 11 – October 14, 2023. Save the date and stay tuned for more information!
Save the Date: 2023 ASCAT Conference (10/25/23-10/28/23)
The 2023 Annual Scientific Conference on Sickle Cell and Thalassaemia (ASCAT) will be held from October 25 – October 28, 2023, in London, England. Save the date and stay tuned for more information! Register to attend here.
Save the Date: SCAGO 3rd Annual Sickle Cell Summit (11/03/23-11/04/23)
The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its 3rd Annual Sickle Cell Disease Summit from November 3 - November 4, 2023. The theme for this year’s summit is “Advocacy for Sickle Cell Disease,” and participants will have the opportunity to attend either in-person or virtually. Save the date and stay tuned for more information!
**SCD & COVID-19 RESOURCES**
Spread the Word
The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org