The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help…
Articles by Hawken Miller
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,…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is…
This weekend at the Westgate Park Open Air Shelterhouse in Columbus, Ohio, walking one step will make an even…
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…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to…
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its…