The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…
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.
People with sickle cell disease (SCD) in Ghana — a country in sub-Saharan Africa, a region with the world’s highest SCD prevalence — often go undiagnosed until age 4 and during a pain crisis, a study into patients in Accra, the country’s capital, reported. These findings reflect the importance…
A new treatment, called Adakveo (crizanlizumab), is now available to treat sickle cell disease (SCD) patients — the first time in decades that a new therapy for the disease has been made accessible — through the United Kingdom’s National Health Service (NHS), according to the U.K.
A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.
Two years since its establishment, the Networking California for Sickle Cell Care initiative has seen increasing numbers of specialized clinics and healthcare professionals knowledgeable about sickle cell disease (SCD) and is setting new goals to improve the lives of patients in the state, the Network announced in its…
A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…
The National Institutes of Health (NIH) has awarded a $10.5-million grant to support several research projects seeking to improve care for people with sickle cell disease (SCD). Research will focus on children and young adults, and on combating racism and other barriers to proper healthcare. SCD disproportionately affects Black…
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,…
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