News

The Sickle Cell Voices Alliance, a partnership of the Sickle Cell Disease Association of America, Inc., the Sickle Cell Disease Association of Canada and Sickle Cell Society, United Kingdom, is hosting an externally led patient-focused drug development (EL-PFDD) meeting.

Masterclass is back! Join us on Tuesday, September 29, for this free, virtual event. Our panel of experts and warriors will explore how new approaches in sickle cell disease care can help improve outcomes and shape how health care is addressed now and in the future.

Recently, new recommendations to the vaccination schedule were issued by executive order. Changes to the vaccination schedule and vaccination recommendations can be confusing to the sickle cell warrior community.

The Sickle Cell Disease Association of America, Inc. (SCDAA) was deeply saddened to hear of the recent loss of Genesis Jones.

In recognition of the Congressional Black Caucus' 55th Annual Legislative Conference, SCDAA is pleased to announce it will host a fall Sickletini on the Hill event!

The Medical Research and Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news that Oxbryta® (voxelotor) will not be made available for the treatment of sickle cell disease.

As we get closer to the SCDAA Annual Convention we would like to recognize the amazing work performed by community health workers (CHWs) with the SCDAA CHW P.O.W.E.R. Award. This award recognizes exemplary performance by individuals identified by their supervisors and peers as having consistently excelled in their positions and demonstrated integrity and a strong commitment to the sickle cell disease (SCD) community and values of the community health worker profession.

The Medical Research and Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc., (SCDAA) is excited about the Food and Drug Administration’s (FDA) approval of Casgevy (exagamglogene autotemcel) for sickle cell patients aged 2 years and older. We are encouraged to learn they are “committed to prioritizing and speeding up the review of products that address critical U.S. health priorities,” including sickle cell disease (SCD).

The success of any organization, for profit or not for profit, is measured by its leadership. As organizational leaders, we value the commitment, vision and passion our board members bring. The board of directors for Sickle Cell Disease Association of America, Inc. (SCDAA) looks to those who serve – or have served – so passionately, to nominate qualified individuals to the board of directors for SCDAA.

The Sickle Cell Disease Association of America Inc. urges the U.S. Department of Health and Human Services (HHS) and its Health Resources and Services Administration (HRSA) to issue the funding opportunity for the Sickle Cell Disease Newborn Screening Follow-Up Program to ensure the next five-year grant cycle, which is set to start Sept. 1, proceeds without delay.