I was fortunate to be able attend the @NationalOrganizationforRareDisorders Rare Diseases + Orphan Products Breakthrough Summit (#NORDSummit) on October 17-18 in-person in Washington, DC via a full scholarship. During this highly anticipated [...]
Web Associate Eddie Delgado shares his impressions of the Rare Disease Summit held virtually by NORD earlier in the month.
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.
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 [...]
In 2022, our theme, “It’s Time to Tell the Stories,” marked a significant milestone as we celebrated 20 years of non-profit service. See our 2022 Annual Report.
David Josephy, PhD, of LRG Canada, shares his summary of the GIST-relevant presentations at CTOS.
Our theme for 2021 was It's Time. The year challenged us all, but most especially our patients and caregivers who were striving to survive this rare cancer.
Dr. Jason Sicklick of Moores Cancer Center at UC San Diego dedicated his new research lab to the memory of GISTer Merak Melikian Hatounian.
COVID-19 - Resources GIST Patients Need - Please know that the Life Raft Group is here to support you during this Coronavirus crisis. We will continue our daily services during this time and we will be distributing information and messages of hope through all our communication channels.
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