November 19, 2020November 19, 2020 Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry News, syndicated Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start ... Read more
September 30, 2020September 30, 2020 Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US News, syndicated It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family ... Read more
August 13, 2020August 13, 2020 New Streaming Channel Showcases Rare Disease Films News, syndicated When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out ... Read more
May 22, 2020May 22, 2020 Video Games Connect Chronically Ill Children Isolated at Home, Hospital cystic fibrosis, News, syndicated Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the ... Read more
April 1, 2020April 1, 2020 NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum News The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until ... Read more
February 26, 2020February 26, 2020 Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar News Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking ... Read more
February 11, 2020February 11, 2020 FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar News The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 ... Read more
