United to Conquer Sickle Cell Disease

SCDC Update, September 2017


SCDC Celebrates Sickle Cell Awareness Month

This month marks one year since the Sickle Cell Disease Coalition (SCDC) was formed to help amplify the voice of the sickle cell disease (SCD) stakeholder community, promote awareness, and improve outcomes for individuals with SCD. The growing SCDC membership now consists of over 50 national and global groups, which has more than doubled in just one year. The SCDC is celebrating its first anniversary and Sickle Cell Awareness month by expanding its communication outlets and highlighting the progress SCDC members have made over the past year to address the global burden of SCD.

  • Earlier this month, the SCDC joined Twitter. Please follow the Coaltion on Twitter, our handle is: @ConquerSCD. By following the SCDC on Twitter you will be able to share and have access to important information from the SCDC and Coalition members, as well as well as SCD related news, in real time. You are encouraged to follow @ConquerSCD and continue to use #ConquerSCD in your tweets.
  • The Coalition just launched an updated SCDC website. Learn more about SCDC members’ activities to address the four priority areas in the State of Sickle Cell Disease 2016 Report Card: Access to Care, Training and Professional Education, Research and Clinical Trials, and Global Issues.

Conquer SCD

SCDAA Celebrates SCD Victories

Join the Sickle Cell Disease Association of America (SCDAA) and partners, the American Society of Hematology, the Centers of Disease Control, the Emergency Department Sickle Cell Collaborative, and the National Institute for Children’s Health Quality for the second Twitter Party on Thursday, September 14, 2017, from 12:30 p.m. - 1:30 p.m., ET with the theme: “Access to Care and Treatment at its Best.” This twitter party is part of an ongoing weekly series in September. The last two parties will cover the following topics:

  • Thursday, September 21, 2017: Pharma Initiatives on the Horizon
  • Thursday, September 28, 2017: Advances in Finding a Cure

Register now and follow SCDAA on Twitter @SCDAAorg.

SCDAA Twitter Party

Learn About Today’s Faces of Sickle Cell

Throughout September, National Sickle Cell Awareness Month, the National Heart, Lung, and Blood Institute (NHLBI) is featuring Today’s Faces of Sickle Cell Disease, a campaign that elevates the stories of people, including patients, researchers and caregivers, who have dedicated their lives to finding a widely available cure for sickle cell disease. Today’s Faces of Sickle Cell Disease shares brief profiles showcasing the personal impact sickle cell disease has had on them. Read their stories of strength, perseverance, and dedication here.

Faces of SCD

Sickle Cell Disease Handbook

The Association of Pediatric Hematology/Oncology Nurses has developed a resource for sickle disease patients and their families. The Sickle Cell Disease Handbook provides an overview for patients and their families on SCD. Each handbook is written at the 6th grade level allowing parents to review it with their children.

ASH Announces Plans for SCD Registry

The American Society of Hematology (ASH) has announced plans to develop a registry that will harness the power of big data to conquer blood diseases worldwide. Sickle cell disease is one of the two initial conditions that the registry will focus on. Through the registry, ASH will initiate a shared information resource to advance collaborative hematologic research across the globe. Read more about it in the latest version of The Hematologist, ASH’s publication.

Upcoming SCD Events

Research Directions in Sickle Cell Disease - Sept. 14

Join the National Heart, Lung, and Blood Institute (NHLBI) for a Facebook Live event on Thursday, September 14, 2017, 11:45 a.m. ET. The event is called “Research Directions in Sickle Cell Disease: Advancing toward a widely available cure!” and will showcase NHLBI researchers and sickle cell disease (SCD) clinical trial participants discussing the latest in SCD research. Visit the NHLBI Facebook page the day of the event to tune in.

FB live event

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 p.m. - 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 Wednesday, September 27, 2017, 1:00 p.m. - 2:15 p.m. 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. 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 of the webinar and register today.

Conferences & Training

6th Annual Sickle Cell Disease Therapeutics Conference

The 6th Annual Sickle Cell Disease Therapeutics Conference, a forum to discover the latest advancements and future trends for sickle cell disease and drug development is scheduled for Thursday, 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 Wednesday, October 11- Friday, October 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.

Research and Clinical Trials in Sickle Cell Disease - Family Engagement

Join the Sickle Cell Disease Association of Canada in collaboration with the Sickle Cell Disease Association of Nova Scotia on Thursday, October 19, 2017, 9 a.m. – 3 p.m. to learn about research and clinical trials in sickle cell disease.

Senator Jane Cordy who advanced “An Act Resecting Sickle Cell Awareness Day” will also be present. Meet healthcare professionals, researchers, and patient families.

  • Meals and accommodations will be provided for patient families outside of HRM
  • Child friendly space available
  • Refreshments will be provided
  • Bus tickets available if desired

Email sicklecellnovascotia@gmail.com or visit sicklecellnovascotia.ca for more information.

Project ECHO Training on Sickle Cell Disease

A Project Extension for Community Health Care Outcomes (ECHO) training will be held on Monday, October 23-Tuesday, October 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 Wednesday, October 25- Saturday, October 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.

Keynote Speakers & Presentations

Friday, October 27 - Patrick Hines, MD, PhD – Innovations in Blood Function Diagnostics
Saturday, October 28 – Clinton Joiner, MD, PhD – The Red Blood Cell Membrane as a Target for New SCD Therapies
Saturday, October 28 – Alexis Thompson, MD, MPH – Gene Therapy as a Cure for Sickle Cell Disease

National SCDAA Convention

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

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