DISCLAIMERThe information and materials accessed through or made available for use on any of our Sites, including, any information about diseases, conditions, treatments, or medicines, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment, and your participation on our Sites does not create a healthcare professional-patient relationship. You should consult a doctor or other qualified health care professional regarding any questions you have about your health or before making any decisions related to your health or wellness. Call your doctor or 911 immediately if you think you may have a medical emergency.
Trusted Resources: News & Events
Latest announcements and gatherings
CRISPR could end sickle cell disease, but signing up black patients for clinical trials will be a hard sell
The first attempts to use a groundbreaking gene-editing technology in people will likely target patients with sickle cell disease, a crippling inherited disorder that in the U.S. predominantly strikes African-Americans.
That should be welcome news, after decades of sickle cell patients being neglected by the health care system, scientists, and drug companies. But the long and ugly history of unethical experimentation and mistreatment of black patients could make recruiting volunteers to try largely untested CRISPR therapies a tough sell.
“You can’t expect this population is just going to stick out their arm for an IV,” said Mary Brown, who heads the Sickle Cell Disease Foundation of California and has worked with patients for four decades. “There’s a lot of education that needs to be done. I don’t want to say hand-holding, but that’s what it is.”
education & researchMedical and Surgical Complications of Sickle Cell AnemiaThis book is a wide-ranging guide to the...
news & eventsStudy Confirms Safe Use of Opioids for Pain Control in Sickle Cell DiseaseThe most common cause of hospital admiss...
news & eventsKids With Sickle Cell Anemia are More Sedentary Than Healthy Peers, Study SuggestsChildren and adolescents with sickle cel...
education & researchSuccessful utilization of an electronic pain diary in a multinational phase 3 interventional study in pediatric sick...Background: Patients with sickle cell a...
news & eventsSiklos (hydroxyurea) now available through ProCare Pharmacy Care’s Siklos At Home programMedunik USA announced today that...
news & eventsEmmaus Life Sciences, Inc. to present results of phase 3 study of endariTM (L-glutamine oral powder) at 59th America...Emmaus will present results of a Phase 3...
videos & visualsHydroxyurea for Children – A HRSA EMBRACE Projecthttps://www.youtube.com/watch?v=LprBMpPb...
send a message
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
Support for this site is provided by
This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.