United to Conquer Sickle Cell Disease

SCDC Update

SCD Highlighted at 2017 Hematology and Oncology Society of Africa Conference

The third annual Hematology and Oncology Society of Africa (HOSA) Conference was held on July 31-August 2 in Nairobi, Kenya. The conference’s theme, “Hematology in Africa: Beyond Benign; More than Malignant” explored many of the contemporary challenges and advances in hematology, oncology, as well as research and clinical practice. Sickle cell disease was highlighted in a number of sessions as global work to improve care for those impacted by the disease was demonstrated.

There were approximately 100 people in attendance form Kenya, Tanzania, Madagascar, South Africa, Ghana, Nigeria, Senegal, Sudan, Ethiopia, Liberia, Cameroon, and other African nations. Talks by the British Society of Hematology and the American Society of Hematology provided overviews of their respective global portfolios and discussed opportunities to collaborate. For more details about the conference click here and additional information about HOSA is available on their website.

NHLBI’s Annual Sickle Cell Disease Clinical Research Meeting

The National Heart, Lung, and Blood Institute hosted its annual Sickle Cell Disease Clinical Research (SCD) Meeting on August 14-17. The meeting provided a forum for investigators, healthcare providers, and patient advocates to discuss the progress of ongoing clinical trials, hear presentations about new scientific and clinical developments in SCD, and interact with other researchers and NHLBI staff in an informal setting. This year, the meeting included an update on stem cell transplantation for SCD and a symposium on data science in SCD research. The meeting concluded with a symposium on chronic pain, as well as promoting diversity in clinical trials and recruitment in SCD. Other session topics also focused on gene editing; prospective data standardization; pain management; the opioid epidemic; and the American Society of Hematology’s Multifaceted Initiative on SCD, including the development of an SCD registry.

September is Sickle Cell Awareness Month

Next month is Sickle Cell Awareness Month. Help us #ConquerSCD this September by sharing the Sickle Cell Disease Coalition’s sample social media posts to spread the word about SCD! These sample posts convey clear information on a variety of SCD topics, including:

  • Access to care
  • Training and educations
  • Research and clinical trials
  • How SCD affects people globally

These messages can be shared with images and videos, which can be accessed here. Don’t forget to add the hashtag #ConquerSCD throughout the month of September.

Celebrating SCD Victories Twitter Party Series

The Sickle Cell Disease Association of America (SCDAA) will host a series of Twitter Parties in September 2017 to celebrate National Sickle Cell Awareness Month.

Join SCDAA as they partner with advocacy organizations, corporate and federal partners to share victories and other exciting information about what is happening in the sickle cell community. The community is encouraged to participate every Thursday in September from 12:30 to 1:30 p.m. ET, by using the hashtag #SCDVICTORIES to important Tweets and comments on the following topics:

  • September 7, 2017: Standing as One Voice in Advocacy & Awareness
  • September 14, 2017: Access to Care and Treatment at its Best
  • September 21, 2017: Pharma Initiatives on the Horizon
  • September 28, 2017: Advances in Finding a Cure

Visit the SCDAA website to learn more and to register.

Upcoming SCD Events


Reducing Transfusion Complications and Other Surveillance-Supported Efforts in Hemoglobin Disorders-Aug. 30

The California Rare Disease Surveillance Program is hosting a webinar on “Reducing transfusion, complications and other surveillance-supported efforts in hemoglobin disorders, onWednesday, August 30, 2017 from 1-2:00 p.m. ET.

The webinar will highlight presentations by:

  • Angela Snyder, PhD, MPH, Georgia State University,Georgia Health Policy Center;
  • Jane Branscomb, MPH, Georgia Health Policy Center; and
  • Ross Fasano, MD, Children’s Healthcare of Atlanta, Emory University

The agenda will include a brief update of the Sickle Cell Data Collection Program (the host of the webinar). Register here.

ASH Webinar - Coding for Sickle Cell Disease - Sept. 5

Providers treating patients with sickle cell disease (SCD) continually struggle with inefficient reimbursement which can ultimately impact access to care. The Current Procedural Terminology (CPT) codes and the Diagnosis-Related Group (DRG) codes assigned for these patient visits have a significant impact on reimbursement. There is often a disconnect between a clinician’s documentation and the resulting CPT and DRG codes assigned by a hospital coder. On September 5, 2017 from 3:00 to 4:00 p.m. ET, the American Society of Hematology will host a webinar, Coding for Sickle Cell Disease. The webinar will outline best practices for documentation of patients with SCD, and the many major comorbidities and complications for which these patients frequently present. Adequate documentation will help coders assign the correct CPT and DRG codes, ultimately resulting in appropriate care and appropriate reimbursement. The webinar will feature Dr. Michael DeBaun, a leading expert in the care of children with sickle cell disease at the Vanderbilt University School of Medicine, and Ellen Riker, an expert in public and private insurance reimbursement and coverage policies. The webinar will also provide time for speakers and participants to discuss relevant issues during a question-and-answer session. Click here to register.

Sickle Cell Disease Webinar for Patients and Families - Sept. 19

The National Marrow Donor Program is hosting a free webinar on Tuesday, September 19, 2017, 1:00 to 2:15 p.m. ET. During this webinar, participants will learn about:

  • Different types of transplant for sickle cell disease (SCD)
  • Transplant facts from myths
  • Signs of severe SCD
  • When to see a transplant doctor
  • Transplant recipient’s experience • Resources for you and your family

Speakers include:

  • Allistair Abraham, MD, Children’s National Medical Center
  • Amber Igodan, Transplant Recipient for SCD
  • Jaqueline Dioguardi, PA-C the Sickle Transplant Alliance Research.

To register, please email: patientinfo@nmdp.org.

Advances in Blood and Bone Marrow Transplantation for Sickle Cell Disease - Sept. 27

Attend a live webinar on September 27, 1:00-2:15pm ET sponsored by the National Marrow Donor Program and Sickle Transplant Alliance for Research, to explore the latest advances in blood and marrow transplantation (BMT) as a cure for sickle cell disease (SCD). Experts will discuss psychosocial, sociocultural and financial barriers to care, and bring to light models and strategies for overcoming these barriers and providing access to evidence-based care for patients. Access full description and register today

Conferences & Training

6th Annual Sickle Cell Disease Therapeutics Conference

The 6th Annual Sickle Cell Disease Conference, a forum to discover the latest advancements and future trends for sickle cell disease and drug development is scheduled for September 14, 2017, in New York, NY. Conference attendees will hear from innovative industry leaders, patients, physicians, and clinical-stage companies. To register for the conference, please visit www.SCDconference.com.

11th Annual Sickle Cell Disease and Thalassemia Conference

The 2017 Annual Scientific Conference on Sickle Cell and Thalassemia is a three-day conference aimed at all those with a common interest in sickle cell disease and thalassemia. It will be held in London on October 11-13, 2017. There will also be sessions on genetics and genomic progress, curative therapies and emerging services, as well as abstract and poster presentations. For more information and to register click here.

Project ECHO Training on Sickle Cell Disease

A Project Extension for Community Health Care Outcomes (ECHO) training will be held on October 23-24, 2017 in Atlanta, GA. The training will be led by the American Academy of Pediatrics, a Project ECHO Superhub and will be designed specifically for organizations interested in using the ECHO model in their own settings to improve the health care of individuals living with sickle cell disease (SCD). The ECHO model increases access to specialty treatment in rural and undeserved areas by building capacity amongst front-line physicians to identify, treat, and manage the care of patients with complex conditions.

The training provides the following:

  • Overview of the ECHO model and the importance of following the protocol in achieving success
  • Overview of key skills and requirements needed to properly use model
  • Framework needed to develop a teleECHO (virtual) clinic for patients with SCD
  • Information about using the ECHO model to develop a state-wide surveillance (health monitoring system)
  • Presentations from groups who have already used the ECHO model to improve care of patients with SCD
  • Opportunity to network with the other training session attendees

Attendance is free, but space is limited. Please RSVP by August 25th to Mandip Kuar at wvx6@cdc.gov and include a brief description of your organizations’ s proposed strategy for using Project ECHO to improve care for patients with SCD.

Please not that this event will take place during the two days preceding the Sickle Cell Disease Association of America’s 45th Annual National Convention. These two events are not connected.

SCDAA’s 45th Annual National Convention

The Sickle Cell Disease Association of America’s conference is scheduled for October 25-28, 2017, in Atlanta, Georgia. This convention fosters the exchange of the latest scientific and clinical information related to the disease. This is done through the offering of innovative symposia, training seminars and interactive panel discussions. In addition, this year’s convention offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against SCD. To learn more about the event and to register, please click here.

3rd Annual Sickle Cell Disease Symposium

The Carolinas HealthCare System is hosting its 3rd Annual Sickle Cell Disease Symposium on October 28, 2017 in Concord, North Carolina. This educational program will focus on the “nuts and bolts” of SCD management by providing a general overview of the disease pathophysiology and using case studies to demonstrate optimal management of various organ system complications in the adult. Robust opportunity will be given for a Q & A with experts from around the country. The deadline to submit an abstract is August 28- more information on abstracts can be found here.

Registration for the event is now open: http://www.cvent.com/d/s5qf3v.

Spread the Word

The status quo is unacceptable & we are setting out to change it. Join us to #ConquerSCD! www.scdcoalition.org

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