United to Conquer Sickle Cell Disease

SCDC Update

The ASH CONSA Launches Programs in Ghana, Nigeria, and Zambia

Each year, more than 300,000 babies in sub-Saharan Africa are born with sickle cell disease (SCD), but many do not live past the age of five because they lack access to comprehensive care and early intervention programs. The American Society of Hematology (ASH) and ASH Consortium on Newborn Screening in Africa (CONSA) are committed to curbing this public health crisis.

The ASH CONSA is a consortium comprising ASH leaders, African hematologists, and international hematology experts collaborating with local governments and health care clinics to advance SCD screening and care in sub-Saharan Africa. As of April 2021, the ASH CONSA has launched SCD newborn screening programs in Ghana, Nigeria, and Zambia, an important first step toward expanding access to early intervention and comprehensive care across the region.  Four additional countries in the consortium – Kenya, Liberia, Tanzania, and Uganda – are also preparing to launch screening programs in 2021.

Read more here.

NIH Releases New Toolkit for SCD and Hemophilia Researchers 

The PhenX Toolkit is a free web-based resource providing standard data collection protocols for conducting biomedical research on SCD and hemophilia inhibitors. Supported by the National Heart, Lung, and Blood Institute (NHLBI) and other National Institutes of Health (NIH) Institutes, this toolkit is designed to increase the impact of epidemiological, biomedical, clinical, and translational studies by enhancing statistical power and enabling comparisons of studies. Access the toolkit here

Amplify Sickle Cell Voices Webinar Series Part Two Running Thru October 2021 

The Australian Sickle Cell Advocacy, Inc. and partners are bringing back the popular Amplify Sickle Cell Voices series. Part one of this series engaged over 40 guests from 23 countries in discussion on SCD-related issues, and part two will feature critical conversations with an even broader scope of global SCD experts and perspectives. The webinar series returns with an interactive twist: all participants will be included in discussion and activities through breakout rooms in each webinar session. Part two launched on April 17, 2021 and will run thru the end of October 2021.

Click here to learn more.

Education and Research Reviewer Volunteer Opportunity for People Living with SCD 

Be The Match is actively recruiting people with SCD to become volunteer Education and Research Reviewers. In this role, volunteers help inform Be The Match’s patient education and research. This opportunity is very flexible, and volunteers are only required to participate in two projects a year, a time commitment of about 2-3 hours. Email Alexa Rafferty (araffert@nmdp.org) for more information.

CDC’s Sickle Cell Data Collection Program Announcements 

The Sickle Cell Data Collection program determines the number of people living with SCD and monitors changes related to their health over time. Below are some updates from the Centers for Disease Control and Prevention’s (CDC) program:

TIF Releases Free, Online Course on SCD for Health Care Professionals

The Thalassaemia International Federation (TIF) recently released a new e-course on SCD for health care professionals. The SCD e-course has been reviewed and endorsed by the European Hematology Association (EHA). This online SCD Course for health care professionals is TIF e-Academy’s third course, with the first two focused on thalassemia. A complementary course for people living with SCD is also coming soon. All courses on TIF e-Academy are free and available to all health care professionals and patients though a simple registration process. Certificates are provided to all persons who successfully complete the SCD e-course.

Register for the free course here.

Be the Match Advocates for Patients Living with SCD in Georgia  

On March 4, 2021, Be The Match held a donor recruitment event at Liberty Plaza at the Georgia State Capitol. This event increased awareness of the Be The Match Registry and shared the importance of diversity in the donor registry to ensure all patients have an equal chance at finding a match.  State Senator Tonya Anderson and Representative Gloria Frazier sponsored a Senate and House resolution declaring March 4 “Be The Match Day” in Georgia and encouraged Georgians to join the registry. Constance Benson, sickle cell warrior, Jermain Reid, Acute Myeloid Leukemia (AML) transplant recipient, and Tunisia Thorne, bone marrow donor, shared their stories with an audience of legislators and staff.

Keep an eye out for additional opportunities to partner with Be The Match:

  • Be The Match ATL High School Program works with school systems in Atlanta, as well as in Clayton, DeKalb, and Fulton counties to help young people join the registry. This program provides an opportunity for high school students to earn a stipend and community service credit while helping the Black and African American community with prevalent health issues.
  • We Are The Cure Cheek Week (July 11 – July 17): Join fellow Atlanta community members for a week of events with local civic and faith-based organizations, elected officials and transplant center partners.

Celebrate World Sickle Cell Awareness Day on June 19th by Joining the Shine The Light Campaign

In honor of World Sickle Cell Awareness Day on June 19, 2021, the Sickle Cell Disease Association of America (SCDAA) and the Sickle cell Improvement across the North East ReGion through Education (SiNERGe) collaboratively developed the “Shine the Light on Sickle Cell” campaign. This campaign invites everyone to join with friends, family, neighbors, and other community members, as people around the nation and across the globe host and hold local gatherings to shine the light on SCD. Save the date and visit the Shine The Light website to learn about ways you can help spread SCD awareness with your community on June 19th! Click here to learn more.

ECSF Study: “Sickle Cell and My Mental Health” Seeking Expert Partners 

SCD remains an important topic for discussion, research, innovation, and quality improvement globally. A key issue within the SCD field is a lack of understanding of the social, emotional, and psychological effects on one’s mental health and well-being throughout the lifespan. The European Sickle Cell Federation (ESCF) – an SCD advocacy organization led by patients and patient advocates – has embarked on a research project to better recognize, understand, and support the mental health of individuals living with SCD. This research study aims to characterize mental health disparities faced by individuals living with SCD, with a special focus on the mental impacts of Vaso-occlusive crises. ESCF welcomes partnership with expert clinicians, psychologists, researchers, and patients on this project. For information or to partner with, please contact; David Zachary Issom (david.issom@escfederation.eu) and Lora Ruth Wogu (loraruth@escfederation.eu).


Stream the Virtual 2021 Indiana Sickle Cell Conference on April 23

The Martin Center Sickle Cell Initiative is pleased to announce its 2021 Indiana Sickle Cell Conference. This half-day conference will take place from 9:00am to 12:30pm EST on April 23, 2021 and feature educational sessions for healthcare providers, patients/families, and social services providers. Local and internationally known experts will present important, contemporary information that will broaden current thinking while covering treatment protocols that can improve the health and longevity of youth affected by SCD. Featured speakers include Ahmar U. Zaidi, MD, Seethal Jacob, MD, MS, FAAP and Emily Riehm Meier, MD, MSHS. These sessions are open to the public and will be streamed live on Facebook. Visit the event page here.

Register for Virtual Event, “Patient Engagement & Regenerative Medicine: An FDA CBER Workshop for Patient Advocates” 

The U.S. Food and Drug Administration’s (FDA) Center for Biologics Evaluation and Research (CBER), Office of Tissues and Advanced Therapies (OTAT) is hosting a virtual event titled “Patient Engagement & Regenerative Medicine: An FDA CBER Workshop for Patient Advocates” on Thursday, May 6, 2021, 11:00 a.m.–3:00 p.m. EST. This free workshop will gather patients, caregivers, advocates, and other important stakeholders to discuss ways for people living with SCD and advocates to work with FDA to help advance regenerative medicine therapies, such as curative gene and cell therapies.

**Workshop Objectives: **

  • Learn about opportunities for patients to engage with the FDA to provide their input and for organizations to share research activities regarding regenerative medicine therapies, including gene and cell therapies.
  • Share case studies from previous patient engagement experiences and discuss ways to enhance interactions between patients, their advocates, and the FDA to help advance regenerative medicine and other therapies for the patients who need them most.

Register to attend here.

New SCD Research at the ASGCT Annual Meeting

Register for the 2021 American Society of Gene and Cellular Therapy (ASGCT) Annual Meeting from May 10-14 to see the latest research in SCD. The Presidential Symposium will feature two presentations:

  • Base Editing Rescues SCD in Human Hematopoietic Stem Cells and in Mice
  • Safety and Efficacy Results with a Single Dose of Autologous CRISPR-Cas9-Modified CD34+ Hematopoietic Stem and Progenitor Cells (HSPCs) in Transfusion-Dependent Thalassemia (TDT) and SCD.

Additionally, a pre-meeting workshop entitled the, “Patient Advocates’ Role in Advancing Gene Therapy” will be held at 11:00am EST on Monday, May 10, 2021. This workshop is for individuals with genetic disorders, caregivers, and other SCD advocates and will address topics such as:

  • the clinical trials process,
  • the role of patient advocates in fostering gene therapy research,
  • the development of effective partnerships; and
  • challenges and opportunities in gene therapy development.

Individuals living with a rare disease and caregivers of someone living with a rare disease may attend the workshop for free; eligible patient advocates may attend the workshop at a reduced rate. Learn more here.

Register for Upcoming PRDPF! Webinar on SCD: The New Frontier Part 2

Putting Rare Diseases Patients First! (PRDPF!), is hosting a webinar on SCD–The New Frontier to inform individuals living with SCD and their caregivers about curative SCD therapies and opportunities for engagement.  The webinar is scheduled for Friday, May 28, 2021 at 11:00am EST. The webinar is free to the public and may be streamed via Zoom, Facebook Live, or PRDPF!’s YouTube channel. Register to attend here.


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