Hawken Miller, features writer —

It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Regina Hartfield is set to become the president and CEO of the Sickle Cell Disease Association of America (SCDAA) on Jan. 14. She brings with her experience ranging from project manager at Memorial Sloan-Kettering Cancer Center and community relations coordinator at The New York Botanical Garden to, most recently,…

Prompted by the disparities in care between children and adults with sickle cell disease (SCD) and inspired to raise awareness about rare diseases, Cory Lewis has made it his personal mission to improve health for the African-American sickle cell community. Lewis, who is a 27-year-old leasing agent and has…

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…

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,…

Note: This story was updated July 7, 2021, to clarify that Hertz Nazaire lived with his godmother, rather than his grandmother, after his mother’s death.  A Connecticut-based artist living with sickle cell disease and blindness in his right eye is using his art to advocate for…

Velvet Brown-Watts was devastated when her son, Jeremiah Watts Jr., now 16, was diagnosed with sickle cell disease in 2004 at 2 months old. “It was probably one of the worst things I ever heard,” Brown-Watts, 46, told Sickle Cell Disease News. Doctors at…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…