SCDC Update
Celebrate World Sickle Cell Awareness Day (WSCD) 2022
This year, the Sickle Cell Disease Coalition is celebrating World Sickle Cell Awareness Day (WSCD) on Sunday, June 19, 2022, by honoring stories of global sickle cell disease (SCD) warriors around the world. Follow along on Twitter and join us in highlighting the work of Dr. Alex Kumar, a global health physician and photojournalist amplifying stories of global warriors’ experiences and inspiring resiliency living with sickle cell. Dr. Kumar’s online repository captures SCD warrior voices across the globe to raise awareness of sickle cell disease and help change how the world sees it. Celebrate the day by exploring the online repository and sharing these sickle cell stories with your community. Learn more here.
CDC WSCD Digital Toolkit
In recognition of World Sickle Cell Day, the Centers for Disease Control and Prevention (CDC) released a digital toolkit to help spread awareness of SCD. The toolkit includes shareable graphics, sample social media posts highlighting the voices of SCD warriors, trivia, and more. Access the toolkit here.
WSCD Campaign: Shine the Light on SCD
The Sickle Cell Foundation of Georgia, inc. (SCFG) encourages everyone to join the SCD community to Shine the Light on Sickle Cell on June 19th, WSCD. This international awareness day, as designated by the World Health Organization (WHO) and the United Nations (UN), is observed annually with the goal to increase public knowledge and an understanding of SCD and the challenges experienced by warriors, their families and caregivers. Throughout the United States, multiple landmarks will shine RED in recognition of WSCD. Learn more here.
ACEP Toolkit: “Managing SCD in the Emergency Department”
The American College of Emergency Physicians (ACEP) released its “Managing SCD in the Emergency Department (ED)” toolkit to aid physicians in providing high-quality emergency care for people living with sickle cell. This toolkit provides evidence-based, clinical content in an easily accessible format so physicians can learn and apply best practices and key guidelines for people living with SCD while at the bedside. Access the toolkit here.
Novartis Press Release on Partnership with ASH on SCD Newborn Screening
Novartis recently announced a partnership with the American Society of Hematology (ASH) to provide six additional African nations with technology that is already being used in Ghana to document and share the diagnosis of babies with SCD. Read the full press release here.
ASH Bringing Sickle Cell Disease to Life Podcast: Season 2 Episode 4
Tune in to Season 2 of the American Society of Hematology (ASH) Bringing Sickle Cell Disease to Life Podcast. In Episode 4, host Dr. Wally Smith interviews Dr. Solomon Ofori-Acquah, SCD researcher who studies acute chest syndrome and explains how to go from the lab bench to the bedside of people living with the disease. You will also hear from Dr. Courtney Fitzhugh, and advocate Kyle Smith on how translational research can directly impact people living with SCD. Listen to the episode and subscribe to the podcast here.
SCDAA Call for SCD Research Abstracts
The Sickle Cell Disease Association of America (SCDAA) requests SCD research abstract submissions for its annual convention, which will take place virtually from October 11-15, 2022. Abstracts must include a list of authors, research objectives, methods, results and conclusions and cannot exceed 1,000 words. The submission deadline is June 30, 2022. Learn more here.
AABB Reviewed Article: “Annual Out-of-Pocket Expenses for SCD Care Average $1,300”
The Association for the Advancement of Blood and Biotherapies (AABB) recently reviewed an article titled, “Annual Out-of-Pocket Expenses for SCD Care Average $1,300.” The article notes that increased out-of-pocket costs persist for SCD warriors due to regular medical appointments, frequent urgent care and emergency medical visits, and greater prescription costs than people who do not have SCD. Learn more here.
Sickle Cell Disease News Article: “2 Proteins That Silence Fetal Hemoglobin May Be Therapy Target”
Sickle Cell Disease News recently published an article titled, “2 Proteins That Silence Fetal Hemoglobin May Be Therapy Target.” The article highlights researchers’ hypothesis that inhibiting the production of two specific proteins will raise fetal hemoglobin levels in people with dysfunctional adult hemoglobin, such as people living with SCD. Learn more here.
ADRP Resource: “Vein to Vein: The Science of Blood Donation”
ADRP, an International Division of America’s Blood Centers, recently developed a resource titled, “Vein to Vein: The Science of Blood Donation.” This resource provides a comprehensive education program, student activities, teacher preparation guides, and more to aid high school teachers prepare a lesson on sickle cell and blood donations. Learn more here.
Got Transition Pediatric to Adult Transition Toolkit
Got Transition is a program of the National Alliance to Advance Adolescent Health, which aims to improve transition from pediatric to adult health care using innovative strategies. This toolkit was developed for families to use during pediatric-to-adult healthcare transition and includes resources for both parents/caregivers and young adults. Learn more here.
PAF Co-Pay Relief Fund
The Patient Advocacy Foundation (PAF) provides its Co-Pay Relief Fund, putting patient, family, and peace of mind above all else. This funding resource provides direct payment for co-pays, co-insurance, and deductibles for patients across the U.S. who need financial assistance. Learn more and apply here.
KCA & SCDAA “Know and Tell” Resource on Sickle Cell Trait
The Kidney Cancer Association (KCA) and the Sickle Cell Disease Association of America (SCDAA) partnered to create the “Know and Tell” fact sheet. This resource highlights sickle cell trait (SCT) and its link to renal medullary carcinoma to promote early identification, proper care, and increase positive outcomes for individuals with SCT. Learn more here.
**SCD EVENTS**
CDC & ACEP Webinar: “Breaking Down Barriers to Emergency Department Care for People with SCD”
Join the Centers for Disease Control and Prevention (CDC) and the American College of Emergency Physicians (ACEP) for a panel discussion between people living with SCD, an emergency physician, and a representative from CDC on the impacts and effects of the disease on care in the ED. The program will take place on June 16, 2022. Attend to take a deeper dive into what it’s like to live with SCD and how you can improve your practice. Learn more here.
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.
NMA 2022 Annual Convention & Scientific Assembly
The National Medical Association’s (NMA) Annual Convention and Scientific Assembly attracts more than 2,500 leading African American physicians, physician executives, health professionals, academicians, and scientists from across the country each year and offers exhibitors a targeted audience not only in primary care, but also an additional 25 other specialties. The event will take place from July 30 to August 3, 2022, in Atlanta Georgia. Learn more here.
**SCD & COVID-19 RESOURCES**
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The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org