SCDC Update
Celebrate National Blood Donor Month with the Sickle Cell Disease Coalition (SCDC)
Blood donors are key advocates in the fight to conquer sickle cell disease (SCD). In celebration of National Blood Donor Month, the Sickle Cell Disease Coalition (SCDC) is spreading awareness about the importance of blood donation through its National Blood Donor Month 2023 Resource Hub & Toolkit. This resource hub summarizes various efforts SCDC members are leading to diversify the blood supply to aid SCD warriors. Access the toolkit here.
SCDC Blood Donation Resource Library
The Sickle Cell Disease Coalition Blood Donation Resource Library emphasizes the importance of blood donation for the SCD community. This library provides information on where to donate blood locally, how blood donations are made safe during the COVID-19 pandemic, and what you can do to spread the word. Learn more here.
Common Sense Podcast Episode: “Bukky Bolarinwa: My Journey with Sickle Cell”
The Common Sense Podcast interviewed Bukky Bolarinwa, SCDC Global Issues Working Group Co-Chair, and Founder of the Haima Health Initiative. This interview highlights Bukky’s journey living with SCD, as well as her advocacy for more blood donors to aid SCD warriors. Learn morehere.
ABC & ADRP Website: DonatingBlood.org
ADRP, an International Division of America’s Blood Centers (ABC), recently launched a new website to widely share tailored information and resources for prospective donors, media representatives, and educators. These resources are non-branded and may be freely used. Learn morehere.
AABB Locator Tool: WheretoDonateBlood.org
The Association for the Advancement of Blood & Biotherapies (AABB) webpage titled WheretoDonateBlood.org helps individuals find their nearest blood donation site. Learn more here.
Sick Cells & Pfizer Resource: SCD Patient and Caregiver Preference Study Summary
Pfizer worked with Sick Cells to understand how much different features of potential sickle cell treatments matter to people with SCD and their caregivers. These results will help Pfizer design clinical trials that measure what matters to warriors and caregivers and make sure they are developing treatments that meet the needs of people with SCD and their caregivers. Learn morehere.
NHLBI Webpage: Blood Donation Toolkit
The National Heart, Lung, and Blood Institute (NHLBI) Blood Diseases and Disorders Education Program is excited to share resources for National Blood Donor Month, including a pre-written article, social media resources, blood donation fact sheets, and other informative resources that are free to share. Learn more here.
Peace FM Ghana Article: “International Sickle Cell Centre Partners with AirTeltigo to Create Awareness on Sickle Cell Disease”
The International Sickle Cell Centre (ISCC), a registered non-profit organization in Ghana, has partnered with AirtelTigo Touching Lives, for an educational campaign focused on SCD. The goal of this collaboration is to raise public awareness on SCD, increase support for affected individuals, and empower people living with the disease to live beyond the challenges SCD may present. Learn more here.
The Guardian Article: “Access to Safe, Quality Blood Threatens Achievement of Universal Health Coverage in Nigeria”
The Guardian published an article titled, “Access to Safe, Quality Blood Threatens Achievement of Universal Health Coverage in Nigeria.” This article highlights Haima Health Initiative, a non-profit organization that aims to make sure patients in hospitals across Nigeria get access to safe blood and blood products when they need it, no matter where they are. Learn more here.
Calling Hematology Trainees: ASH Awards Available for Professional Development & Research Support
The American Society of Hematology (ASH) offers both short- and long-term opportunities for aspiring hematologists in medical school or residency to conduct hematology research under the supervision and mentorship of ASH member mentors. Several awards are available for trainees from historically underrepresented groups in the U.S. and Canada. Learn more here.
Cayenne Wellness Center Program: Sickle Cell Trait Awareness Campaign
Cayenne Wellness Center recently launched the Sickle Cell Trait Awareness Campaign, a five-year effort to support people impacted by sickle cell trait in California. The campaign uses a multi-method approach to educate students, athletes, parents, and educators in California about the importance of getting tested for sickle cell trait and knowing the risks associated with the gene. Learn more here.
GSCDN Call for Expressions of Interest to Host the 5th Global Congress on Sickle Cell Disease
The Global Sickle Cell Disease Network (GSCDN) invites expressions of interest to host the 5th Global Congress on Sickle Cell Disease. The Congress will take place in 2025 in Africa. Institutions or groups interested in hosting the Congress should submit an expression of interest no later than February 28, 2023, at 12:00pm ET. Learn more here.
SCAGO Hope Gala Awards: Nominations Open Through 1/30/23
In 2005, the Sickle Cell Awareness Group of Ontario (SCAGO) introduced its Hope Awards to honor the many heroes who have contributed relentlessly to the advancement of SCD. Individuals may nominate candidates for one or more of the award categories, including medical, nursing, allied health, media, volunteering, legislative, humanitarian, and community awards of excellence. The deadline for submission is January 30, 2023. Learn more here.
USA Health Article: USA Mourns the Loss of Johnson Haynes Jr., M.D.”
USA Health published an article titled, “USA Mourns the Loss of Johnson Haynes Jr., M.D.” This article discusses the passing of Johnson Haynes Jr., a longtime, highly respected clinician and scientist who led the USA Comprehensive Sickle Cell Center and cared for adults with SCD in the southern half of Alabama. Learn more here.
Business Standard Article: “Murmu Asks Gates Foundation to Give Attention to Ailments Affecting Tribals”
Business Standard published an article titled, “Murmu Asks Gates Foundation to Give Attention to Ailments Affecting Tribals.” This article shares President of India’s recent request of the Bill and Melinda Gates Foundation to expand their current efforts in India and give attention to serious ailments that affect tribal communities, like sickle cell anemia. Learn more here.
SCDAA Medical and Research Advisory Committee Releases Statement on Influenza
The Sickle Cell Disease Association of America (SCDAA) Medical and Research Advisory Committee (MARAC) released a statement on influenza in relation to SCD warriors and caregivers. The statement highlights influenza prevention tips, information on SCD and influenza, and more. Learn more here.
**SCD EVENTS**
AABB Webinar: “Individual Risk Assessment: What You Need to Know as the U.S. Prepares for FDA’s Decision (23EL-803)” (1/ 26/22)
Ahead of anticipated changes to donor eligibility screening in the United States, AABB will host a “Hot Topic Discussion” focused on individual risk assessment (IRA) and its implications for the blood supply and the blood community in the U.S. The program is free to attend and will take place on Thursday, January 26, from 12:00pm-1:00pm ET. Register to attend here.
Sickle Cell Data Collection Program Webinar: “Depression Screening in Sickle Cell Disease: What Little We Know and Why to Do It Anyway” (2/9/23)
The CDC Sickle Cell Data Collection Program will hold a webinar titled, “Depression Screening in Sickle Cell Disease: What Little We Know and Why to Do It Anyway.” This program will take place on Thursday, February 9, from 1:00pm-2:30pm ET. During this program, Dr. Pat Carroll will review the literature on depression and depressive symptoms in SCD and offer an approach to screening and management. Register to attend here.
SCAPN EVENT: “2nd Annual Best of ASH SCD Review” (2/10/23)
The Sickle Cell Adult Provider Network (SCAPN) is hosting the 2nd Annual Best of ASH SCD Review on Friday, February 10, from 11:00am-2:00pm ET. The event will feature 30-minute sessions on the following topics covered at the 64th ASH Annual Meeting & Exposition:
- Basic Science - Julia Xu (UPMC) & Gregory Vercellotti (University of Minnesota)
- Therapeutics - Satheesh Chonat (Emory) & Fuad El- Rassi (Emory)
- Outcomes & Quality - Zalaya Ivy (University of Minnesota) & Paula Tanabe (Duke)
- Transplant/Gene Therapy - Amar Kelkar (Dana Farber) & Courtney Fitzhugh (NIH)
After each session, there will be a follow-up social hour for online meeting. This event is free and open to physicians, NP/PA, nurses, social work, and clinic team members interested in the care of adult sickle cell patients. This forum and symposium is open to members of pharma, however, SCAPN asks members of pharma refrain from posting on the SCAPN website or asking questions of the speakers, especially as related to your company and product.
SCAGO Annual General Meeting (AGM) 2023 (2/11/ 23)
The Sickle Cell Awareness Group of Ontario (SCAGO) will hold its Annual General Meeting (AGM) 2023 on Saturday, February 11, 2023. All stakeholders are encouraged to attend either as members or observers. Only members who are in good standing (paid their membership due for the years 2022 and 2023) will have voting rights at the AGM. Register to attend here.
2023 Virtual Hemoglobinopathy Counselor Training Course (4/12/23-4/13/23)
This two-day course, presented by the Cincinnati Comprehensive Sickle Cell Center, will take place from April 12 to April 13, 2023, using Zoom web conferencing. The course registration fee is $250. The deadline to register is April 1, 2023. Nursing and social work continuing education credits are available. For more information, please email:Christina.Bennett@cchmc.org. Learn more here.
IASCNAPA Sickle Cell Nursing Bootcamp (4/17/23-4/21/ 23)
The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) will hold its Sickle Cell Nursing Bootcamp from April 17 to April 21, 2023, at the University of Tennessee Health Science Center, in Memphis, Tennessee. This program offers specialized education and training to nurses who deliver care and develop care policy for people living with SCD, including bedside and clinic nurses, nurse managers and administrators, and nurses in academia focused on SCD. Applicants must be registered nurses actively involved with the SCD patient community. 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