Mary Chapman, features writer —

Even while hospitalized with one of the acute pain crises that sickle cell disease (SCD) patients frequently experience, it was common for Rena Grant to continue plugging away at her job as director of legislation for a South Carolina House of Representatives committee. Her courage and dedication — and the…

Through a new partnership between Emmaus Life Sciences and UpScript, patients with sickle cell disease (SCD) will soon be able to consult with a physician from home and have greater access to Endari (L-glutamine). Through telehealth — using computers and mobile devices to manage and receive…

The Sickle Cell Community Consortium is gearing up for its inaugural Caregiver Summit, to be held virtually Nov. 12–14. The event is being hosted in partnership with Cleverly Changing, the Parent 2 Parent initiative, and members of the sickle cell disease (SCD) community nationwide.

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…