SCDC Launches National Sickle Cell Awareness Month Webpage: Knowledge is Power Pt. 2 

To celebrate National Sickle Cell Awareness Month and keep track of everything happening throughout the month, the Sickle Cell Disease Coalition (SCDC) created a consolidated webpage of events, programs, and resources Coalition members are leading to spread awareness.  Access the Knowledge is Power Pt. 2 webpage throughout the month and share these resources with your community.

SCDC Releases Fact Sheet for Five Year Anniversary 

The Sickle Cell Disease Coalition (SCDC) is an alliance of diverse stakeholders from across the world uniting to conquer sickle cell disease (SCD). Since its establishment in 2016 by the American Society of Hematology (ASH), the SCDC has grown tremendously in its membership, operations, and impact. In celebration of the Coalition’s fifth year, the SCDC is sharing some highlights of its current priorities, accomplishments, and future activities through a 2021 SCDC Snapshot.  Help us celebrate this anniversary by sharing the Snapshot with your communities. Access the 2021 SCDC Snapshot here. 

SCDAA Celebrates National Sickle Cell Awareness Month 

National Sickle Cell Awareness Month was designated by Congress to focus attention on the need for research and treatment of SCD. The Sickle Cell Disease Association of America (SCDAA) will participate in National Sickle Cell Awareness Month throughout September by hosting a series of events and supporting the events of member organizations. Learn about these many events here.

SCDAA’s MARAC Issues Updated COVID-19 Guidance

The SCDAA Medical and Research Advisory Committee (MARAC) has released two statements with updated COVID-19 guidance.

• Access the COVID-19 update here.
• Access the MARAC Advisory statement about monoclonal antibodies against SARS-CoV-2 here.

White House Releases National Sickle Cell Awareness Month 2021 Proclamation 

On August 31, 2021, United States President Joe Biden proclaimed September 2021 as National Sickle Cell Awareness Month. In the proclamation, President Biden reaffirmed his administration’s commitment to advancing research towards finding a cure and fighting health disparities. Read the official White House statement here.  

New York Times Publishes Article on Federal Investment in Curative Gene Therapy for SCD 

The New York Times recently published an article titled, “Pioneering Gene Therapy Freed Her of Sickle Cell. Is a Cure at Hand?” This article explores ongoing clinical trials using gene therapy to cure SCD, as well as the U.S. government’s investment in finding a cure that is both safe and accessible. Read the article here. 

ADRP Releases Blood Donor Diversity Resources for National Sickle Cell Awareness Month

To inform people about the need for diverse blood donations and celebrate National Sickle Cell Awareness Month, ADRP created and released educational materials on blood donor diversity, including English and Spanish versions of social media graphics, videos, and more. Access these non-branded resources here. 

NIH Commentary on Guidelines for Sickle Cell and Pregnancy 

A recent commentary from the  National Institute of Neurological Disorders and Stroke’s Office of the Clinical Director titled, “Standardizing care of those at great risk: the importance of sickle cell in pregnancy practice guidelines” was published in the British Journal of Haematology. This brief paper highlights the need for guidelines around pregnancies in people with SCD in the U.S. Read the commentary here. 

FDA Grants Priority Review to Oxbryta for Pediatric SCD Care

Read the recent article in HemOnc Today about how the U.S Food and Drug Administration (FDA) granted priority review to voxelotor for the treatment of children aged 4 to 11 years with SCD.  The Agency also granted priority review to a new drug application that seeks approval for a new dispersible tablet dosage form of voxelotor (Oxbryta, Global Blood Therapeutics).  The FDA is expected to make decisions on both applications by the end of the year.  

NHLBI National Sickle Cell Awareness Month Toolkit 

NHLBI developed a toolkit to raise awareness about SCD and share how research has advanced. Find SCD resources, including social media graphics and messaging, facts sheets, inspiring stories from those living with SCD, a template article that can be shared in publications, blogs, or websites, and more, within the National Sickle Cell Awareness Month toolkit. Follow and tag NHLBI’s brand new Twitter account @BloodHealthEd to like and share SCD content!  

Reach a Child Initiative Zambia’s (RACIZ) Publishes August 2021 Newsletter 

In the August 2021 newsletter, Reach a Child Initiative Zambia (RACIZ) announced a donation of 2000 capsules (20 boxes) of hydroxyurea from the Rotary Club of Lusaka. In partnership with the Children’s Hospital at the University Teaching Hospitals, RACIZ created the Hydroxyurea Project to provide medication for children in Zambia living with SCD. To learn more about new SCDC member RACIZ and this project, read the newsletter here.

UPCOMING SCD EVENTS

Weekly Webinar Series Hosted by ASTCT & NMDP on Transplants to Treat SCD (9/15 and 9/20)

The American Society for Transplantation and Cell Therapy (ASTCT) and the National Marrow Donor Program (NMDP) are co-hosting a weekly webinar series throughout September on transplants as treatment option for SCD.  

• Decision Making and Preparation for Transplant: Sickle Cell Patients and Clinical Perspectives 
  • When: September 15th 11:30 am ET 
  • Register here
• Barriers and Access to Transplant Care for Sickle Cell Patients 
  • When: September 20th 2:00 pm ET 
  • Register here

10th Annual SCD Therapeutics Conference (9/15) 

The SCD Therapeutics Conference, co-hosted by Global Blood Therapeutics and Sickle Cell Disease Association of America, will take place virtually on September 15 at 9:00 am ET.  The program provides a forum to discuss the latest advancements and future trends for treating individuals with SCD. Learn more and register online here.

13th Annual SCD Educational Seminar (9/16-9/18) 

Cayenne Wellness Center, in collaboration with Axis Advocacy, is inviting you to join them for the 13th Annual Sickle Cell Disease Educational Seminar, from September 16 to 18, 2021! Attendees will learn about the latest scientific and clinical information relating to sickle cell through lectures, panel discussions, and presentations from experts focusing on pathophysiology, disease complications, management and treatment options and may earn up to 19 CME credits. Register here.

Australian Sickle Cell Advocacy Inaugural Sickle Cell Conference (9/17-18)

The Australian Sickle Cell Advocacy, Inc., is hosting its Inaugural Sickle Cell Conference virtually from September 17 to 18, 2021. This will be the first national conference in Australia on SCD and will center on the theme Breaking the Barriers: A New Horizon. Learn more here.

STAR’s 8th Annual SCD Awareness 5K Event (9/18-19)

The Sickle Cell Transplant Advocacy & Research Alliance (STAR) is holding its 8th Annual SCD Awareness 5K Event virtually from September 18 to 19, 2021.  All are welcome to participate by not only walking and running, but also cycling, skating, and hiking.  Register here.

SCDAA Sickle Cell Awareness Month Twitter Parties (9/21 & 9/30) 

The Sickle Cell Disease Association of America (SCDAA) is hosting its annual Twitter Parties throughout September. Join these online Twitter conversations to interact, share, learn and celebrate accomplishments for the SCD community by posting tweets using the hashtag #SickleCellMatters. Twitter parties will take place September 21 and 30, from 12:30 to 1:30 p.m. ET.  Register here.

Nurse Champion Model for Group Reproductive Genetic Counseling for Sickle Cell Hemoglobinopathies: Reverse Innovation from Africa to the U.S. (9/28) 

Join the International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) for their Sickle Cell Awareness Month webinar with speaker Dr. Stephanie Ibemere on September 28 at 1:00pm ET. Register here.

SCD & COVID-19 INFORMATION AND RESOURCES

• SCDAA’s Medical and Research Advisory Committee Advisory Guidance 
  • COVID-19 Update 
  • Access the MARAC Advisory statement about monoclonal antibodies against SARS-CoV-2
• ASGCT’s Educational Resources on mRNA Vaccines for COVID-19
• ASGCT’s Educational Resources on Adenovirus-Based Vaccines for COVID-19
• SCDC’s SCD and COVID-19 Resource and Information Page