SCDC Update
Sickle Cell 101’s Global Treatment Options for SCD Fact Sheet
Today, sickle cell warriors have a variety of treatment options to explore in their fight to conquer sickle cell disease (SCD). Sickle Cell Disease Coalition (SCDC) member, Sickle Cell 101, released a fact sheet breaking down all SCD treatments used around the globe, including pharmacological, herbal, curative, and other types of treatments. Explore these global treatment options here.
CHOP Resource: Summer Camp Action Plan for Students with SCD
The Children’s Hospital of Philadelphia (CHOP) released its Summer Camp Action Plan for Students with SCD resource. This resource highlights unique factors of sickle cell that camp counselors and staff should be aware of, such as the impact of extreme temperatures, fatigue, sleeping conditions, and more. Learn more here.
SCDC Sickle Cell Reading Lists
To help spread SCD awareness and amplify warriors’ stories, the SCD Coalition (SCDC) has created SCD reading lists for children, young adults, and adults. These reading lists highlight recommended literature on SCD across an array of genres, including graphic novels, memoirs, historical non-fiction, and more. Learn more here.
ASCA 2022 Scientific Conference Accepting Research Posters & Abstracts
Australian Sickle Cell Advocacy, inc. (ASCA) is hosting its 2nd Scientific Conference in Sydney, Australia on September 10, 2022. This year’s theme is “Health Equality for all: The Importance of Newborn Screening in Health Management.” ASCA is accepting scientific abstracts for the conference until August 6, 2022. Learn more here.
SCDAA SCD Educational Repository
The Sickle Cell Disease Association of America (SCDAA) has updated its SCD Educational Repository. This resource was designed to provide an up-to-date directory of educational, evidence-based information, and resources on sickle cell. Learn more here.
ASH Press Release: “ASH Advocates for the Right to Maternal Health Care”
The American Society of Hematology (ASH) released a press release in response to the U.S. Supreme Court decision overturning Roe v. Wade. The statement addresses ways that hematologic conditions can adversely affect maternal health, asserts that the choice to terminate a pregnancy is a crucial clinical consideration when a woman is at risk of severe health complications or death, and states that access to evidence-based medical information and lifesaving medical options, including termination of pregnancy, is a maternal right. Learn more here.
FWGBD Reproductive Health & SCD Webinar Recording
The Foundation for Women & Girls with Blood Disorders (FWGBD) hosted a webinar on reproductive health issues for women living with SCD. In this webinar, Dr. Kim Smith-Whitley shared evidence-based, practical information on how to manage the acute and chronic complications of SCD for women and girls, especially as it relates to reproductive health. Watch a recording of the webinar here.
Preliminary Research Published on the Possibility of Using the Plant Alchorea Cordifolia, or “Christmas Bush,” to Treat SCD
A recent study was published in the Journal of Clinical Medicine titled, “Isolation and Characterisation of Quercitrin as a Potent Anti-Sickle Cell Anaemia Agent from Alchornea cordifolia.” This study investigates if the chemical compound found in the plant Alchorea cordifolia, also known as “Christmas Bush”, could work as an anti-sickling agent for use in future therapies. Learn morehere.
CDC Sickle Cell Data Collection Program Report: Data to Action - Gaps in Knowledge
The Centers for Disease Control and Prevention (CDC) Sickle Cell Data Collection program collects health information about people with SCD to study long-term trends in diagnosis, treatment, and healthcare access, seeks to address gaps in knowledge. The Sickle Cell Data Collection program is the first data collection system of its kind, collecting population-based data from multiple sources over many years to present a comprehensive picture of the SCD population. Learn more here.
PAF Sickle Cell Care Line
The Patient Advocacy Foundation (PAF) website offers a Sickle Cell Care Line resource, which provides free and confidential assistance to SCD warriors and their caregivers with navigating financial and practical challenges that impact their ability to access healthcare. Learn more here.
Pharmacy Times Article: “World Sickle Cell Day: The Pharmacist’s Role in Medication Management”
Pharmacy Times recently published an article titled, “World Sickle Cell Day: The Pharmacist’s Role in Medication Management.” This article emphasizes that the role of the pharmacist in SCD management revolves around appropriate pain management and preventative therapy against painful sickle cell crises. Learn more here.
American Journal of Hematology Article: “Post-Traumatic Stress Disorder in Children Affected by SCD”
The American Journal of Hematology published an article titled, “Post-Traumatic Stress Disorder in Children Affected by SCD.” This piece demonstrates the existence of post-traumatic stress disorder (PTSD) in children living with SCD who have already experienced a painful crisis, and notes that identifying PTSD in children living with SCD has a high clinical relevance as it relates to child development. Learn more here.
Learn About Clinical Trials on Sickle Cell Studies
The SCD Studies platform is a patient-centric website created by Sickle Cell 101 to provide SCD warriors with resources to learn about ongoing clinical trials and make informed decisions regarding their participation. This program aims to make studies more accessible to the global sickle cell community and empower SCD warriors to actively engage with research and clinical trials. Learn more here.
Sick Cells Caregiver Help Desk
The Sick Cells website includes its SCD Caregiver Help Desk to aid the SCD community. This resource offers free support to family caregivers across the country by connecting them with caregiving experts who can offer support and find crucial information individuals need to navigate the caregiving journey. Learn morehere.
SCAGO Resource: Physical Activity & SCD
The Sickle Cell Awareness Group of Ontario (SCAGO) released its Physical Activity & SCD fact sheet to aid SCD warriors. School is out and summer break is here. Kids and adults are getting more active outdoors. Daily exercise is healthy for everyone including SCD warriors. This resource provides physical activity guidelines for a more safe and effective exercise routine. Learn more here.
**SCD EVENTS**
SCCC 9th Annual Sickle Cell Warrior & Family Educational Symposium (7/20/22-7/24/22)
The Sickle Cell Community Consortium (SCCC) will hold its 9th Annual Sickle Cell Warrior & Family Educational Symposium virtually from July 20 to July 24, 2022. The program will focus on “The Reset” of the warrior community and highlight holistic techniques that lead to daily rejuvenation and guide a healthy mind, body, and spirit. Learn more here.
NMA 2022 Annual Convention & Scientific Assembly (7/30/22-8/3/22)
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.
Sickle Cell Data Collection & California Rare Disease Surveillance Program Webinar: “Medical-Legal Partnership: An Interdisciplinary Approach to Pediatric Patients with SCD” (8/4/22)
During this webinar, Pam Kraidler and Christina Scott from Atlanta’s Health Law Partnership (HeLP) will present findings on the ways that social determinants of health negatively impact children living with SCD, as well as legal interventions that may improve a child’s outcomes. This webinar will discuss Supplemental Security Income applications and denials, housing conditions, education, and other socioeconomic issues that impact children with sickle cell and their families. The webinar will be held August 4, 2022, from 1:00pm-2:30pm EST. Learn more here.
SCDC Annual Summit (9/9/22)
The Sickle Cell Disease Coalition (SCDC) will hold its Annual Summit virtually on September 9, 2022, from 10:00am-2:00pm EST. Save the date!
11th Annual Sickle Cell Disease Therapeutics Conference (9/14/22)
Global Blood Therapeutics (GBT) and the Sickle Cell Disease Association of America (SCDAA) will co-host the 11th Annual Sickle Cell Disease Therapeutics Conference on September 14, 2022, from 9:00am-3:00pm EST. The virtual program will provide a forum to discuss the latest advancements and future trends for treating individuals living with SCD. Learn more here.
14th Annual SCD Educational Summit (9/15/22-9/17/22)
Cayenne Wellness Center will hold its 14th Annual SCD Educational Summit virtually, from September 15 to September 17, 2022. The summit is designed to address the multi-factorial aspects of sickle cell disease (SCD) and sickle cell education. Learn more here.
**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