Almost 100,000 people in the United States have been diagnosed with sickle cell disease (SCD). About one million people worldwide have the disease. Patients are at risk of death in…
According to a story from Healio, a recent study has found that use of hydroxyurea in alignment with treatment guidelines has the potential to bring down symptoms of cerebrovascular disease…
CRISPR was first described ten years ago as a viral mechanism for defense, taken from bacteria, which could be transformed into genetic scissors and accurately alter DNA. About Casgevy CRISPR…
By Sharon King, Advocacy and Community Engagement Manager with Aldevron Living with the excruciating pain, debilitating fatigue, and other symptoms of sickle cell disease is challenging. Powerful painkillers and blood…
Throughout her seventeen years alive, Daisha Felps has learned to face obstacles with resilience and strength. And obstacles come around more than she would like. You see, Felps has sickle…
The month of September is recognized as National Sickle Cell Awareness Month in the US. This is a time to spread awareness about sickle cell disease among the general public…
According to a story from BioPharma Reporter, the company bluebird bio has recently submitted its Biologics License Application (BLA) to the US Food and Drug Administration (FDA). This application is…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
In 2014, the National Heart, Lung, and Blood Institute released updated clinical guidelines in reference to the care of children with sickle cell anemia. The updated guidelines recommended the use…
A therapy is granted Orphan Drug designation if the FDA believes that this therapy will treat, prevent, or diagnose rare conditions. Rare conditions, in the United States, are those affecting…
On the field, Running Back (RB) Tevin Coleman has done some amazing things. He has played in 94 games, gained 3,319 rushing yards, and scored 25 touchdowns. Off the…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Happy Friday! A tropical storm system will be traveling up through the mid-Atlantic this weekend, bringing wind and rain. Hunker down! This week, we have stories on Duke University being…
Wunmi Bakare described her illness to Essence as a continuous tug-of-war. Balancing sickle cell disease with a nine to five job and trying to stay the course. Then there…
Did you know that September is National Sickle Cell Awareness Month? During this month, various stakeholders come together to share the stories of those affected by sickle cell disease,…
For those living with sickle cell disease (SCD), treatment and management can sometimes be difficult. Currently, there is no cure for SCD. Patients may manage their condition using antibiotics,…
June 19, 2022 will be recognized as World Sickle Cell Day. This international event is intended to help spread awareness about sickle cell disease among the general public and in…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Written By: Teonna Woolford As a child, I never saw myself as anything but “normal.” I loved going to the playground with my friends and jumping rope. My parents encouraged…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
On December 9, 2021, the National Organization for Rare Disorders (NORD) hosted a webinar program titled "Health Equity and Rare Disorders." This webinar was the first of a three-part series…
3rd Annual Holiday Brunch and Gift Spectacular December 11, 2021 Along with the JET Foundation, Dreamsickle Kids will be hosting their 3rd Annual Holiday Brunch and Gift Spectacular providing a…
CRISPR is a gene-editing technique that has revolutionized the medical world with its approach to making precise changes in DNA. CRISPR found its match in 35-year-old Victoria Gray of…
According to a story from MSN, Busola Omiyale's daughter Toriayooluwa was only nine months old when she could tell that something wasn't right. The girl had sickle cell disease, a…
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