SCDC Update, June 2017
World Sickle Cell Day Is June 19th
Help the Sickle Cell Disease Coalition (SCDC) celebrate World Sickle Cell Day on Monday, June 19 by sharing the SCDC’s sample social media posts to spread the word about efforts to #ConquerSCD. 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 #WSCD2017 to your posts so they can be seen by a wider audience on and leading up to June 19!
News from Ontario, Canada: World Sickle Cell Awareness Day Celebration- June 19th
The Sickle Cell Awareness Group of Ontario is holding a World Sickle Cell Day celebration at the Tree of Life in front of the Toronto General Hospital on June 19th from 12PM- 1:30PM. The President/Executive Director of the Sickle Cell Disease Association of Canada, Mrs. Lanre Tunji-Ajayi will be joined by Senator Jane Cordy who introduced Bill S-211 in the Senate (a bill to recognize June 19 in Canada as the National Sickle Cell Awareness Day). Event is free.
For more information, go to www.sicklecellanemia.ca.
On June 19- tweet: “Get tested for sickle cell trait” to six people and tag @scago1; @sicklecellca. Post on instagram: @Scago.1
Please also check out the Patients and Parents Online Forum.
SCD Congressional Briefing Held June 7th
On June 7, SCDC members co-sponsored a successful Congressional Briefing on sickle cell disease (SCD) and gene editing on Capitol Hill. The briefing was hosted by the House Research & Development Caucus and the Congressional Sickle Cell Disease Caucus; and the co-sponsoring organizations included the American Society for Blood and Marrow Transplantation, American Society of Gene & Cell Therapy, American Society of Hematology (ASH), National Marrow Donor Program/Be The Match, Pediatric Hospital Sickle Cell Collaborative, and Sickle Cell Disease Association of America. The program educated members of Congress and their staff on scientific advances that could potentially cure this devastating disease.
Speakers included ASH members, Linda Burns, MD, and Dan Bauer, MD, PhD, who discussed the progress in SCD research as well as curative options such as bone marrow transplantation and gene editing. Constance Benson, a former SCD patient and a transplant recipient, concluded the briefing with an inspiring talk about her personal experiences living with the disease and choosing transplant as a cure. A recording of the briefing can be found by visiting ASH’s Facebook page.
FDA Advisory Committee Approves L-Gluatamine for Sickle Cell Disease
The U.S. Food and Drug Administration’s (FDA) Oncologic Drug Advisory Committee has voted 10 to 3 that the overall risk-benefit profile of oral L-glutamine powder for treatment of pediatric and adult with Sickle Cell Disease (SCD) is favorable. The FDA is set to make the final decision regarding this therapy on July 7th. If approved, the drug will be the first FDA approved treatment for pediatric patients with SCD and the first new treatment for adult patents with SCD in nearly two decades. While the FDA is not bound to the advisory panel’s recommendations, it does take their advice into consideration when reviewing new drugs applications. For more details about the related discussion at the ODAC meeting, please click here.
Sickle Cell Disease Association of America Awarded $11.6 Million Continuation Grant from HRSA
The Sickle Cell Disease Association of America, Inc. (SCDAA) has been awarded $2.9 million annually for the next four years from the Health Resources & Services Administration (HRSA) for the Sickle Cell Disease Newborn Screening Follow-up Program. These funds will be used to establish the national infrastructure to ensure that individuals diagnosed with sickle cell disease (SCD) receive appropriate counseling, education materials, and access to a medical home.
As a current grantee and the lead organization for HRSA’s Sickle Cell Disease Newborn Screening Program, SCDAA has worked with community-based organizations across the country to implement a strengthened approach to access quality care, quality care improvement and strategic activities within the sickle cell community.
4th Annual Sickle Cell Patient & Caregiver Educational Symposium
The Sickle Cell Disease Association of America, Inc. (SCDAA) seeks to highlight the work of Researchers, Community-based Member Organizations, Physicians, Nurses, Social Workers and others working on behalf of people with sickle cell disease and their families. Individuals or organizations interested in presenting reports on work completed or in progress should submit an abstract using the link below. All approved abstracts will be published in the final program to be distributed to registered conference attendees. During peer-review, abstracts judged to be the best in their categories will be selected as national finalists. Abstract Categories Include: - Community Based Research - Clinical Research - Public Health, Policy, and Psychosocial Research - Basic Science and Translational Research
To be eligible, abstracts must meet guidelines and be submitted by June 15, 2017 (there will be no deadline extensions). Abstracts will be reviewed and ranked by the national abstract review committee. Abstract finalists will be judged during oral presentation and the “Best Abstract” in each category will be announced at the conclusion of the 45th Annual National SCDAA Convention. Special awards for the best student and trainee abstracts will also be given. We look forward to seeing you in October!
Annual Sickle Cell Disease Clinical Research Meetings
Registration is now open for the 2017 Annual Sickle Cell Disease Clinical Research Meetings. These meetings are scheduled for Monday, August 14th- Wednesday, August 16th at the Natcher Conference Center on the NIH main campus in Bethesda, MD. These meetings serve as a yearly forum for investigators, practitioners, and health care providers who are interested in discussing new developments in scientific and clinical aspects of Sickle Cell Disease in an informal setting. For more information and to register, please click here.
Space is limited, so please make sure to register early. Registration will close Wednesday, July 26.
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 will take place 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 Thalassaemia 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. The conference serves as an opportunity to learn about the latest advances in clinical care, as well as transition services and emerging new therapies, including updates for curative treatment options. This year’s theme is ‘patient choice in a changing landscape of treatment and cure for sickle cell and thalassemia.’ 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.
SCDAA’s 45th Annual National Convention
Geared towards physicians, researchers, and community health workers, the Sickle Cell Disease Association of America (SCDAA)’s national convention serves as a forum to advocate for improved quality of life for individuals and families affected with SCD and its associated morbidity and mortality. Taking place in Atlanta, GA on October 25-28, the conference 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.