Mary Chapman, features writer —

Hemex Health was awarded third place and $100,000 in a National Institutes of Health (NIH) competition for its collaborative noninvasive diagnostics system for disorders such as sickle cell disease (SCD). The aim of the contest, called the NIH Technology Accelerator Challenge, was to spark development of…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

As it does each September during Newborn Screening Awareness Month, Baby’s First Test is sharing information and stories that highlight efforts throughout the U.S. to bring attention to newborn testing. Baby’s First Test is a program of Expecting Health, an organization focused on pregnancy and newborn health. The…

September is National Sickle Cell Awareness Month, set aside annually to bring attention to the blood disorder and the needs of the community. From securing local government proclamations and hosting awareness events, to distributing information and lighting public spaces red, supporters have begun observing the monthlong event. The theme…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

With a stem cell transplant (SCT) being a potentially curative treatment for sickle cell disease (SCD), a blood disorder that disproportionately affects Blacks, a donor registry is encouraging more African-Americans to join its ranks. Be The Match, the world’s largest and most diverse marrow registry, has opened…

While it will be entirely virtual this year, the 7th Annual Walk With the Stars & Move-A-Thon is taking place July 11 to raise awareness and money to fight sickle cell disease (SCD). Presented by the Sickle Cell Disease Association of America (SCDAA), the signature 5K national event is…

Supporters are poised to mark World Sickle Cell Day, observed each June 19 to raise awareness about the red blood cell disorder, and to raise funds to fight it. Across the globe, supporters will participate in activities such as wearing red for sickle cell disease (SCD), sponsoring a…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…