Category: News

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7th Annual Walk With the Stars & Move-A-Thon Kicks Off July 11 to Fight SCD

BY MARY CHAPMAN While it will be entirely virtual this year, the 7th Annual Walk With the Stars & Move-A-Thon is taking place July 11 to raise awareness and money to fight sickle cell disease (SCD). Presented by the Sickle Cell Disease Association of America (SCDAA), the signature 5K national event is aimed at finding better treatments and a cure...

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BREAKING: World’s Oldest Person Living With Sickle Cell Disorder, Asiata Onikoyi-Laguda, Dies At 94

Credited to The Elites + Details of Her Last Moments Alhaja Ashata Onikoyi- Laguda, the world’s oldest person living with sickle cell, is dead. She passed yesterday, Saturday, in Lagos in her sleep. She was aged 94.  A source from the Onikoyi royal family confirmed the death of the legendary...

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Oral Arginine therapy appears safe, effective for sickle cell disease pain management

ORLANDO — Oral supplementation with arginine resulted in faster resolution of pain associated with vaso-occlusive episodes among younger patients with sickle cell disease, according to the results of a randomized phase 2 trial presented at ASH Annual Meeting and Exposition. The study also showed that patients who had previous arginine...

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California Earmarks $15M for Expanding Care of Adult SCD Patients

By Mary Chapman California’s legislature has committed $15 million toward sweeping enhancement of adult sickle cell disease (SCD) care in a state with historically underserved patients. The initiative is intended to improve care largely through creation of a statewide network of regional adult SCD clinics modeled after the newly opened clinic at the Martin...

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AN INTERVIEW WITH SHARON BROWNE-PETER, A SICKLE CELL DIVA

Let’s start with a brief introduction. Tell us about you? Sharon: My name is Sharon Browne-Peter. I’m 23 with a bachelor’s degree in Real Estate and Urban Planning. In addition to this, I’ve spent the last 2 years working as a certified digital marketing professional. This year I actually founded my...

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FIRST AFRICAN CONGRESS ON SCD

In October 2019, key stakeholders including medical & sickle cell experts, governmental and non-governmental organizations from across Africa and the World came together as a collective on one international stage to discuss the burden of sickle cell disease, its impact on African communities and proffer evidence-based solutions and recommendations to...

California to Expand Innovative Adult Sickle Cell Disease Clinics Statewide 0

California to Expand Innovative Adult Sickle Cell Disease Clinics Statewide

LOS ANGELES, Nov. 25, 2019 /PRNewswire/ — Today California advanced care for people with sickle cell disease (SCD) by launching a new initiative to establish a network of clinics for adults with SCD statewide, expanding services for those impacted by this chronic, debilitating disease. The launch marks the grand opening of a new clinic...

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FDA approves Oxbryta for SCD

The FDA granted accelerated approval to voxelotor for the treatment of sickle cell disease. The approval applies to use of the therapy for patients aged 12 years and older. Voxelotor (Oxbryta, Global Blood Therapeutics) — an oral agent taken once daily — is the first approved treatment that directly inhibits...