MARAC Issues Updated Covid-19 Guidance

September 20, 2021

The Sickle Cell Disease Association of America Medical and Research Advisory Committee has released two statements with updated COVID-19 guidance. MARAC recommendations are making a minor shift to emphasize a more individualized approach and that people with sickle cell disease should have access to monoclonal antibody (mAbs) treatment according to establish guidelines, to prevent mild […]

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Sickle Cell Trait Volunteers Needed

April 27, 2021

You are subscribed to receive research study announcements from the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. To learn more about this NIH study #18-H-0146, or other studies, please call us at 866-444-1132. Sickle Cell Trait Volunteers Needed Doctors at the National Institutes of Health (NIH) seek volunteers with sickle cell trait for […]

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Sickle cell disease patients now eligible for COVID-19 vaccine in Indiana

March 27, 2021

According to Indiana Hemophilia & Thrombosis Center, sickle cell disease that are at least 16 years old are now eligible for the COVID-19 vaccine in Indiana. More Information about this, including how to sign up can be found here.  

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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 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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