The National Organization for Rare Diseases (NORD) has awarded 19 seed grants to non-profit organizations that have been adversely affected by the COVID-19 pandemic. The pandemic has created a financial crisis for non-profits due to the cancellation of large events, particularly fundraisers upon which these organizations depend.
The National Organization for Rare Disorders (NORD) held a Rare Disease Summit in Washington, D.C. October 20019, hosting several thousand people comprised of patients, advocates, non-profit employees, health providers, IT developers, pharmaceutical staff, physicians and researchers, and representatives from government entities.
View our SideEQ article in our October issue The week of October 16 was a busy one for the Life Raft Group’s advocacy efforts. The week began with a trip to the [...]
Advocacy continued to be an important focus in 2015. Our initiatives expanded globally, with the overall goal of assuring that all GIST patients have access to quality medical treatment. The LRG continued to forge [...]
The National Organization for Rare Diseases (NORD) held its 2015 Breakthrough Summit October 21-22 in Arlington, Virginia. This year’s event convened top leaders from the FDA, NIH, Industry, Patient Groups, Payers and Research Institutions to [...]
Food and Drug Commissioner Dr. Margaret Hamburg today conducted an unusual one-on-one dialogue with leaders of approximately 60 patient organizations at a forum hosted by the National Organization for Rare Disorders (NORD).