News


Statement from the Sickle Cell Disease Association of America Medical and Research Advisory Committee (SCDAA MARAC)

February 19, 2021

February 16 2021 – We are aware of the announcement today from bluebird bio regarding the temporary suspension of the clinical trials of its LentiGlobin Gene Therapy for Sickle Cell Disease (bb1111). We have investigated the situation, and we have met with bluebird bio to discuss the information available to the public. MARAC is monitoring […]

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MARAC Advisory Statement: COVID-19 Vaccines

December 29, 2020

December 14, 2020 – News is evolving rapidly about COVID-19 and COVID-19 vaccines. Early results from the COVID-19 vaccine trials are very promising, although the true benefits and risks will not be known until a larger number of people receive the vaccine. The Centers for Disease Control and Prevention (CDC) lists sickle cell disease (SCD) […]

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NHLBI Hope for Sickle Cell Disease Challenge!

November 4, 2020

NHLBI Center for Translations Research and Implementation Science (CTRIS) is leading a SCD challenge (Hope for Sickle Cell Disease Challenge).  Here is a little background and the link: Sickle cell disease (SCD), a group of inherited red blood cell disorders, affects 100,000 Americans, according to the CDC.  It can cause severe, chronic pain and other […]

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UPDATE: First IASCNAPA Conference Rescheduled to April 9, 2021

April 1, 2020

The International Association of Sickle Cell Nurses and Professional Associates (IASCNAPA) Sickle Cell Conference: Treating the Whole Person scheduled for 4/17/2020 is cancelled due to COVID-19 concerns. The decision to cancel the conference took into account many important factors, including the risk of unnecessary exposure to our patient population. The event is rescheduled for April 9, […]

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Elsevier’s Patient Access Program for Research

March 26, 2020

Access for healthcare professionals & patients With our Patient Access Program, patients and their caregivers can receive medical or healthcare related research papers by emailing patientaccess@elsevier.com. This email is constantly monitored by our support teams, who aim to provide individual articles at no cost to patients and caregivers within 24 hours. Requesters simply need to include the […]

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