Mary Chapman, features writer —

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

The Howard University College of Medicine has been awarded a $42,000 grant to support its “LIFE (Learning Is Fundamental for Everyone) with Sickle Cell Disease” project for youth with the inherited blood disorder and their families. The grant, from the Walter Brownley Trust, was awarded to the College of Medicine’s…

A recent survey found that U.S. residents are largely interested in and support continued research into the role of human genetics in treating and possibly curing illnesses such as sickle cell disease (SCD). Commissioned by the American Society of Human Genetics (ASHG) in partnership with Research!America, the…

To help empower individuals living with sickle cell disease (SCD), biopharmaceutical company Emmaus Life Sciences has teamed up with national specialty pharmacy US Bioservices on a treatment adherence program for patients. Through a team of clinicians, the new opt-in enhanced nursing program offers patients information and real-time…

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…

Ghana is working with Novartis to make hydroxyurea treatment available to people with sickle cell disease, and to open a clinical trial in the African country testing the company’s biologic SCD therapy Adakveo (crizanlizumab), recently approved in United States. The five-year, public-private partnership was formed in January…

The Centers for Disease Control and Prevention (CDC) will share an award total of nearly $1.2 million with institutions in seven U.S. states, allowing them to take part in a data gathering program on sickle cell disease and how it affects daily life. The funding brings to nine…

During National Sickle Cell Awareness Month, the American Red Cross is asking people to consider making a blood donation to benefit sickle cell disease patients — like Marqus Valentine. After all, such donations are crucial for Valentine, who was told by physicians, just before turning 30, that he…

From walks to blood drives, a host of activities and efforts are marking this year’s National Sickle Cell Awareness Month, observed annually each September. For its part, Nationwide Children’s Hospital, which has a Comprehensive Sickle Cell and Thalassemia Program, is reminding people of the importance of being tested…

Taking place during National Sickle Cell Awareness Month, the 8th Annual Sickle Cell Disease (SCD) Therapeutics Conference will focus on the latest medical advances and developing treatment trends. To be held Sept. 10 in Washington, D.C., the conference will be hosted by the Sickle Cell Disease Association…