Author Archives: Mary Chapman

Seeking to improve the health and life quality of underserved sickle cell disease (SCD) communities internationally, Global Blood Therapeutics (GBT) has established The GBT Foundation. Created in part to mark the company’s 10 anniversary, the foundation will fund programs around the world that support SCD patients, their families,…

Medical technology company Hemanext is partnering with the Silicon Valley-based nonprofit Sickle Cell 101 (SC101) to promote sickle cell disease education and awareness. The new partners will sponsor local, national, and global efforts to bring attention to the unmet needs of the more than 20 million people…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To improve life for people with sickle cell disease (SCD), Global Blood Therapeutics (GBT) has awarded grants worth $50,000 each to nine community-based, nonprofit groups and institutions across the U.S. to speed the development and use of sustainable, access-to-care programs. These one-year grants are part of GBT’s Access to…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

From sporting red gear to entering a spoken word contest, supporters globally are poised to mark World Sickle Cell Awareness Day, an annual event that takes place on June 19. The goal is to heighten awareness of sickle cell disease (SCD), an inherited blood disorder that affects millions of…

Two U.S. nonprofits are partnering to tackle legislative issues that benefit sickle cell disease (SCD) patients and their families. The partnership between the Sickle Cell Disease Association of America (SCDAA) and the Sickle Cell Community Consortium (SCCC) will include collaborating on the association’s annual Advocacy Day…

To inform sickle cell disease (SCD) patients and their caregivers about blood transfusions, which are commonly used to treat the disorder, the Sickle Cell Disease Association of America (SCDAA) is launching a set of educational materials. The pictorial booklet for children, and companion brochure for parents and caregivers,…

Registration is open for the 8th annual “Walk with the Stars,” one of the largest fundraisers organized by the Sickle Cell Disease Association of America (SCDAA) that supports the development of better treatments and a cure for sickle cell disease (SCD). All proceeds from the July 10 event…