SCDC Update
Breaking News: Donors Needed Amid Severe Blood Shortage
Blood centers across the United States are experiencing the worst blood shortage in over a decade due to COVID-19 impacts. The dangerously low blood supply levels have especially impacted people living with sickle cell disease (SCD), who regularly rely on regular blood transfusions and clinical care for disease management. Relatedly, January is National Blood Donor Awareness Month, which serves as a great opportunity to spread sickle cell awareness and motivate new, diverse donors. Check out some resources below to learn more, schedule a donation appointment, and share the call to action.
Advance National Blood Donor Awareness Month
- ADRP Blood Donor Diversity Social Media Toolkit: ADRP, An International Division of America’s Blood Centers (ABC), has partnered with Sickle Cell Disease Association of America (SCDAA) to create a toolkit of social media and marketing materials that highlight the need for blood donations from diverse donors to aid sickle cell warriors. The toolkit includes English and Spanish versions of social graphics, animated videos, and other tools to spread sickle cell and blood donor diversity awareness. Learn more here.
- Georgia Health Policy Center MySleevesUp Toolkit: The MySleevesUp toolkit is maintained by the Georgia Health Policy Center through the RedHhott Project, whose goal is to reduce complications of blood transfusion and increase diversity in the blood supply for individuals living with SCD and thalassemia. This toolkit offers educational and promotional materials about the need for diverse blood donations to transfuse individuals living with SCD. Access the toolkit here.
- SCDC Blood Donation Resources Library: Last year, the SCDC launched a new section of the Coalition’s website featuring a host of resources on blood donations and SCD. Check out the library to learn about why donating blood is so important, where you can donate locally, how blood donations are made safe during COVID-19, and what you can do to spread the word. Visit the library here.
SCDAA MARAC Advisory Statement: Update About COVID-19
On December 23, 2021, the SCDAA Medical and Research Advisory Committee (MARAC) released an updated advisory statement on the COVID-19 surge with recommendations for people living with SCD. Read the updated advisory statement here.
Light Up for Rare Campaign 2022
The National Organization for Rare Disorders (NORD) asks Americans to plan to participate in the Light Up for Rare Campaign to raise awareness for rare diseases. Participants are encouraged to light or decorate their homes in blue, green, pink, and purple at 7:00 pm local time on February 28, 2022. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 25 million Americans and their families are believed to be affected by rare diseases. Learn more about the campaign here.
Be The Match: Sickle Cell Connect and Warrior Package
Created by Be The Match to build SCD awareness, Sickle Cell Connect aims to connect sickle cell warriors with resources and support to learn more about the disease and explore treatment options. To empower and support warriors throughout their journey, Be The Match created a Warrior Package with useful, free resources and tools. Know that you’re not alone in this journey. Are you a Sickle Cell Warrior or a caregiver? Sign up to receive your Warrior Package today here.
New Article: “How a Call to Action Will Revolutionize SCD”
On January 7, 2022, The Hematologist published an article co-authored by Dr. Ahmar U. Zaidi, Dr. Caterina P. Minniti, and Dr. Ifeyinwa (Ify) Osunkwo entitled, “How a Call to Action Will Revolutionize Sickle Cell Disease”. Read this new publication here.
Interview with New SCDAA CEO Regina Hartfield
SCDAA welcomed their new President and CEO, Regina Hartfield on January 14, 2022. Before this role, Ms. Hartfield served on the association’s board of directors for three years, including as chair of the fundraising committee. To get to know Ms. Hartfield better, Sickle Cell Disease News published an interview with Ms. Hartfield on December 28, 2021. Learn more about Ms. Hartfield’s goals for SCDAA and read the interview here.
NHLBI Resumes Participant Enrollment in Stem Cell Study for SCD
On February 17, 2021, out of an abundance of caution and concern for patient safety, the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), placed an administrative hold on an NHLBI-funded trial, thePilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for Sickle Cell Disease. Following a review of the recommendation of the NHLBI Gene and Cell Therapy Data and Safety Monitoring Board (DSMB), which was informed by a thorough examination of safety information and extensive expert consultations, NHLBI lifted the study’s administrative hold and resumed enrollment on December 1, 2021. Read more here.
ASH Hematology Anti-Racism Toolkit
The American Society of Hematology has released its Anti-Racism Toolkit emphasizing the link between racism and health disparities. Racism affects the integrity and safety of the learning climate and impact the success of future hematologists. This toolkit provides resources to help clinicians, researchers, and educators dismantle racism in their day-to-day practice. Access the toolkit 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.
NCD Child #StandUp Social Media Campaign
NCD Child has launched the #StandUP #SpeakOut social media campaign as part of their Young Leaders Program advocacy in action project, which aims to fight stigma and discrimination among youth living with non-communicable diseases (YLWNCDs). NCD Young Leaders have developed a survey to gain insights into the lived experiences of youth living with non-communicable diseases (NCD) worldwide. This initiative will also identify suggestions and means to eradicate stigma and discrimination among young people living with NCDs. Take the survey here.
Share SCD Resources for Black History Month Messaging
The SCDC Update provides the latest news, events, and information on sickle cell each month. In celebration of Black History Month, sickle cell community members are encouraged to submit newsletter articles about their relevant initiatives, news, and events for inclusion in the February SCDC Update. Please limit article submissions to no more than 150 words and link to additional details. Please email coordinator@scdcoalition.org to share activities your organization is leading, pertinent articles, and other relevant information for each message by Monday, February 14.
**SCD EVENTS**
17th Annual ASCAT Conference
The Annual Academy for Sickle Cell and Thalassemia is joining forces with the European Hematology Society (EHA) and the British Society of Hematology (BSH) to organize the 17th Annual Scientific Conference on Sickle Cell & Thalassemia (ASCAT). This year, ASCAT will take place virtually from January 27 to 28, 2022, and will focus on promoting the latest advances in diagnosis, treatment, and emerging fields in hemoglobinopathies. 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.
**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