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Sickle Cell Disease: FDA Lifts Partial hold on bluebird’s Trial for Patients Under 18

Sickle Cell Disease: FDA Lifts Partial hold on bluebird’s Trial for Patients Under 18

  One year ago, in December 2021, clinical studies of lovo-cel for patients who were eighteen or younger were put on partial hold by the FDA. At the time, bluebird…

Continue Reading Sickle Cell Disease: FDA Lifts Partial hold on bluebird’s Trial for Patients Under 18
Study of the Week: Nearly a Fifth of Sickle Cell Disease Patients May Develop Craniosynostosis

Study of the Week: Nearly a Fifth of Sickle Cell Disease Patients May Develop Craniosynostosis

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…

Continue Reading Study of the Week: Nearly a Fifth of Sickle Cell Disease Patients May Develop Craniosynostosis
With Sickle Cell Disease, a 9 to 5 Job is No Longer Routine

With Sickle Cell Disease, a 9 to 5 Job is No Longer Routine

  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…

Continue Reading With Sickle Cell Disease, a 9 to 5 Job is No Longer Routine
More Diverse Blood Donors are Needed to Support Patients with Sickle Cell Disease

More Diverse Blood Donors are Needed to Support Patients with Sickle Cell Disease

  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,…

Continue Reading More Diverse Blood Donors are Needed to Support Patients with Sickle Cell Disease
Two Novel Sickle Cell Disease Treatments Have Received Orphan Drug and Rare Pediatric Disease Designation

Two Novel Sickle Cell Disease Treatments Have Received Orphan Drug and Rare Pediatric Disease Designation

Global Blood Therapeutics (GBT) has just announced that their therapeutics called GBT021601 (GBT601) and inclacumab for sickle cell disease (SCD) have received both Rare Pediatric Disease Designation and Orphan Drug…

Continue Reading Two Novel Sickle Cell Disease Treatments Have Received Orphan Drug and Rare Pediatric Disease Designation
June 19 is World Sickle Cell Day: Spreading Sickle Cell Disease Awareness

June 19 is World Sickle Cell Day: Spreading Sickle Cell Disease Awareness

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…

Continue Reading June 19 is World Sickle Cell Day: Spreading Sickle Cell Disease Awareness
What is the Cost of Living with Sickle Cell Disease?

What is the Cost of Living with Sickle Cell Disease?

It’s no secret that living with a rare or underserved condition can come alongside a heavy financial burden. A recent study supported by the National Institutes of Health (NIH), Cure…

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Study of the Week: Corticosteroid Use Could Boost Hospitalization Rate in Sickle Cell Disease

Study of the Week: Corticosteroid Use Could Boost Hospitalization Rate in Sickle Cell Disease

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…

Continue Reading Study of the Week: Corticosteroid Use Could Boost Hospitalization Rate in Sickle Cell Disease
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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