Mary Chapman, features writer —

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Global Blood Therapeutics (GBT) is taking proactive measures to support public health efforts and sickle cell disease (SCD) patients during the global COVID-19 pandemic. To help stem the spread of the coronavirus, the company is backing public health strategies, including social distancing. Specifically, GBT is temporarily prohibiting all field…

Record numbers of patients and advocates from across the state of Georgia — which has the nation’s fourth-highest number of people with sickle cell disease (SCD) — turned out recently for the annual Sickle Cell Day at the State Capitol. The day’s annual meeting with legislators and healthcare providers…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

The Institute for Gene Therapies (IGT) has launched, with the aim of maximizing the potential of gene therapies in genetic disorders such as sickle cell disease. Comprised of industry leaders, scientists, and patient advocates, the IGT’s overarching goal is to set the foundation for a modernized regulatory…

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…