Monday, April 11, 2011

RARE makes its debut at the HPS/CHS Family Conference

Regular blog readers will remember that for several years now a documentary film crew has been following the story of the Hermansky-Pudlak Syndrome Network and our quest to find a treatment. This is a pic of me with Nicole Newnham and Dr. Maren Grainger-Monsen, the film makers who have made the film. In the end, they named it "RARE."

I am very pleased with how the film turned out. I can hardly wait to be able to use it as an outreach and fundraising tool.

If you want to read a little bit about the project, go to the Stanford Center for Bioethics Film Project at:

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