‘Together Project’ Leverages HFA and NHF’s Resources, Know-how
The Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) jointly launched the “Together Project,” in…
Articles by Hawken Miller
Uplifting Athletes Tackles Funding for Rare Disease Research, Awareness
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is…
Novel Illustrates Life With Hemophilia, Dungeons and Dragons
The paladin By-Tor from the Order of Light fights to protect others and…
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life…
Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is…
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37…
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to…
Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was…
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its…
Video Games Connect Chronically Ill Children Isolated at Home, Hospital
Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then…