Tuesday, May 27, 2014

Screening of RARE held at Association of Clinical Research Professionals meeting

A screening of RARE was held at the annual meeting of the Association for Clinical Research Professionals (ACRP) in April. The screening was held at a general session and was attended by more than a thousand people who work with clinical trials in various ways.

After the screening Donna and Ashley Appell spoke to the audience about their experience living with HPS. They also answered a wide range of questions from the audience.

Since the event the Network has received several media enquiries and generous donations.

You can see Donna and Ashley answering questions from the audience at: https://www.youtube.com/watch?v=cArkSSGBVLY&feature=youtu.be

On a personal note, I have to say one of the more enjoyable things I've ever done for HPS outreach was participating in the documentary, and then attending screenings as it came out. 

It has always been so interesting to hear the questions people have about the film, about HPS, about clinical trials etc. after they have seen the film. 

I wish there was some way to do a follow up - RARE - the story continued.....but somehow I doubt that is possible. Making documentaries is very time consuming and expensive. I am just so grateful to the Stanford School of Medicine Center for Bioethics and Film for making it possible to have RARE at all. 

 

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