News

Group Focuses on Rare Disease Clinical Trial Participation

Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…

SCD Clinical Trials Network Welcomes First Research Sites

Several clinical research sites seeking to find new treatments for people with sickle cell disease (SCD) are joining a collaborative network created by the American Society of Hematology Research Collaborative (ASH RC). The initiative, called ASH RC Sickle Cell Disease Clinical Trials Network, has already engaged about 24,000 patients…

Awareness Month Targets Research, Education – and Blood Donations

Since Sept. 21, 1983, when then-President Ronald Reagan’s proclamation created National Sickle Cell Anemia Awareness Month, advocates, patients, family members, doctors, and others impacted by sickle cell disease (SCD) have been pushing for increased research and awareness, and better treatments. This year will be no different, as virtual,…

Sickle Cell Warriors Convention Open to Patients, Families Aug. 25-29

The Sickle Cell Consortium, a U.S.-based nonprofit, is hosting a virtual event in late August that will focus on facilitating conversations among people with sickle cell disease (SCD) and their caregivers. “We’re bringing these patients together to talk about what they’re experiencing, strategies for navigating the realities brought…

Register Now for Global Genes’ RARE Patient Advocacy Summit

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…