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.
Articles by Hawken Miller
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends,…
Regina Hartfield is set to become the president and CEO of the Sickle Cell Disease Association of America (SCDAA)…
Prompted by the disparities in care between children and adults with sickle cell disease (SCD) and inspired to raise…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is…
Since Sept. 21, 1983, when then-President Ronald Reagan’s proclamation created National Sickle Cell Anemia Awareness Month, advocates, patients, family…
Note: This story was updated July 7, 2021, to clarify that Hertz Nazaire lived with his godmother, rather than his…
Velvet Brown-Watts was devastated when her son, Jeremiah Watts Jr., now 16, was diagnosed with sickle cell…
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life…
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is…