The Burrill Report: (July 24, 2009): Rare Disease Patient Advocates Part III (.MP3,9.78 Mb)
In this third in a series of podcasts focused on rare disease patient advocates jointly produced by The Burrill Report, the California Healthcare Institute, and the Children’s Rare Disease Network, we speak to Susan Cornelius, business advisor to The Nicholas Conor Institute for Pediatric Cancer Research. When her granddaughter struggled against cancer, she was frustrated that new technology was unavailable to her and that all doctors could offer were surgery, radiation or chemotherapy – what she characterized as cut, burn, or poison the child for a disease, in her granddaughters case, that was genetically-based. Cornelius lost her granddaughter to cancer in 2008, but now works to bring about changes to the way research is conducted.