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…
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.
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…
In some cases, vaccines for COVID-19 can lead to a disease flare in people with cold agglutinin disease (CAD) and related conditions, but these flares can be readily managed with proper treatment, according to an Italian study. These findings point to a need for close monitoring when these patients…
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…
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
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…
SARS-CoV-2, the virus that causes COVID-19, may trigger cold agglutinin disease (CAD) in children, a case report suggests. The report, “Autoimmune hemolytic anemia in children with COVID-19,” was published in the journal Pediatric Blood & Cancer. Autoimmune hemolytic anemia (AIHA), an autoimmune disease characterized by…
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
Cold agglutinin disease (CAD) and not the cancer therapy Keytruda (pembrolizumab) was found to be the cause of anemia in a 64-year-old man with lung cancer, according to a recent case report. The patient’s CAD arose as a result of another type of cancer — a lymphoma —…
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