In this second 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 Beth Anne Baber, CEO of The Nicholas Conor Institute for Pediatric Cancer Research. When Baber’s son Nicholas was diagnosed with stage 3 neuroblastoma she and her husband, both cancer researchers, fully understood the seriousness of the diagnosis. Because of the location of the tumor, radiation and surgery were not options. But as they explored treatments they discovered a startling fact. Most cancer therapies used to treat children were about 25 years old and drug companies weren’t generally pursuing new therapies for children with various cancers because the markets simply weren’t large enough. Her institute offers a new model. It seeks out industry partners to help develop specific technologies it wants to bring into the clinic while helping to fund that work.
https://www.RAREproject.org/news/news.php

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