Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to…
Articles by Hawken Miller
Note: This story was updated Nov. 10, 2020, to clarify that Foggin volunteers with the International Gaucher Alliance and does…
It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was…
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its…
Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then…
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio,…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders…
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500…
The International Gaucher Alliance (IGA), which includes members from 54 countries, has announced a partnership with the…