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…
Articles by Hawken Miller
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…
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…
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people…
NORD Webinar Features SMA Mom Discussing Zolgensma Gene Therapy
Just 27 days after Nicole Almeida gave birth to her son, Matteo, the baby received a one-time infusion of…