Connectivity has become hugely important as we look to build relationships within online rare disease communities. As part of this year’s World Orphan Drug Congress, JUICE is hosting a symposium on making connections in rare diseases at our office in San Francisco. We have an expert lineup of speakers sharing best practices from top pharma and biotech companies. Check out the video to learn more about this exciting event.
One of the speakers will be JUICE’s own Director of Customer Insights, Malcolm MacKenzie. Malcolm will be talking about insight gathering in rare diseases. As part of the preparation for the talk, Malcolm wrote a whitepaper on the different online behaviors in cystic fibrosis, a rare disease, versus a non-rare disease, asthma. You can download the white paper here.
ANNE DAVISON: Hi, I'm Anne Davison and welcome back to "A Shot of JUICE." Today I'd like to share with you some exciting news about our partnership with the World Orphan Drug Congress. In a moment, I'll be presenting some information about an exciting event that we're holding in our San Francisco office. But first I'd like to introduce my colleague, Malcolm MacKenzie, who just authored a paper that's featured on the World Orphan Drug Congress website.
MALCOLM MACKENZIE: Thanks, Anne. At JUICE we're really committed to rare diseases and we had an opportunity to draft a paper for the World Orphan Drug Congress. What we did was a comparison between rare diseases and non-rare diseases. We work in both the asthma space and the cystic fibrosis space and we used one of our insight-gathering tools to look at the behavior of the online communities in both asthma and cystic fibrosis. And we thought we've turned up some really interesting things that we've put in the whitepaper.
AD: That sounds really interesting, Malcolm, and a worthwhile read for attendees at our upcoming event, The Orphan Drug Marketers Symposium, which we're co-sponsoring with the World Orphan Drug Congress and hosting in our office in San Francisco. The theme of the day is “Leveraging Connectivity in Orphan Drug Commercialization.” And, Malcolm, you'll be speaking at the event.
MM: Yes, I'm really excited about the event. It's consistent with the whitepaper that we wrote, which was the insight between rare diseases and non-rare diseases. We're looking at a broader suite of insight-gathering tools, and specifically how you use them in the rare community so that you understand both the physician's perspective and the patient's perspective, but you go a little bit deeper than traditional research.
AD: I'm really looking forward to Malcolm's presentation and he'll be joined with three other speakers from Shire, PTC Therapeutics, and Mast Therapeutics, all sharing their unique stories about marketing orphan drugs.
We are also proud to announce our sponsorship of the EveryLife Foundation for Rare Diseases. This is an organization dedicated to advancing treatment for patients with rare diseases. Each year this organization sponsors an online contest showcasing the artwork of people suffering with rare diseases. We are honored to display some of these paintings in our office during the event.
MM: I think it's going to be an incredible day, between the artwork, the great speakers. I think people are going to get a lot of information and they're going to walk away with new ideas. And some of those new ideas are going to come from Ben Putnam. Ben is our Director of Innovation and he's going to talk about convention presence and how you can leverage technology to improve your presence at conventions.
AD: A lot of great things are in store, so please be sure to download a copy of Malcolm's article from this blog post and check back for a recap of our Orphan Drug Marketers Symposium.