Danijel Romic, a 34-year old GIST patient from Crikvenica in Croatia, was faced with a challenge. Diagnosed with GIST in 2014, he did not have access to a potential life-saving treatment, Nexavar, which in Croatia is not registered for the treatment of GIST. He reached out on Facebook, including to the Life Raft Group page, seeking […]
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NIH Clinic Combines Research, Knowledge, and Hope
I had the pleasure of attending the 15th Pediatric and Wildtype Clinic along with Becky Owens from GIST Support International as patient advocates. The Clinic was held at the National Institute of Health in Bethesda, MD on July 5-7, 2017. The Clinic is a collaboration between clinicians and researchers to collect data, investigate and develop […]
Becky Owens, Dina Data, Dr. Lee Helman, H.E.R.O. campaign, NIH Clinic, pediatric GIST, Tommy Tissue, Wildtype GISTIn the beginning…Patient-reported outcomes
Patient-reported outcomes is a buzz-phase that we hear a lot these days. At the Life Raft Group, I was recently in a meeting where we were discussing patient-reported outcomes, the LRG registry and patient-powered science. I’m still not quite sure what the definition of patient-reported outcomes is, but I can tell you exactly when I […]
Clinical Trials, Gleevec, imatinib, Norman Scherzer, Patient Reported Outcomes, Real World Evidence, STI-571