November 18, 2020November 18, 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
November 9, 2020November 10, 2020 UK Mom Knows Fight Far From Over After Losing Baby to Gaucher Type 2 News Note: This story was updated Nov. 10, 2020, to clarify that Foggin volunteers with the International Gaucher Alliance and does not ... Read more
September 28, 2020September 28, 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 12, 2020August 12, 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 21, 2020May 21, 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
March 26, 2020March 26, 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 27, 2020February 27, 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 12, 2020February 12, 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
February 6, 2020February 6, 2020 IGA, Kantar Partner to Build Global Gaucher Registry for Type 2 and 3 Patients News The International Gaucher Alliance (IGA), which includes members from 54 countries, has announced a partnership with the London-based data consulting company Kantar to ... Read more
