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…
Articles by Hawken Miller
Advocate Encourages Community Not to ‘Live in Silence’
Myasthenia Gravis (MG) Awareness Month may be wrapping up, but advocate Glenda Thomas is just getting started. Diagnosed at…
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…
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…
MG Illuminate Event and MG United, by Argenx, Shine Light on Rare Disease
As part of Myasthenia Gravis (MG) Awareness Month, Argenx — the biotech company developing efgartigimod to possibly treat this disease…
NORD Partners with ‘Sing Me a Story’ for July 18-20 Living Rare Forum
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio,…
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders…