Tapping a Gold Mine of Information
Perhaps surprising to many, “most rare disease organizations are run by parents [of patients],” says Bork. “We don’t have the background in the science. We’re coming into this from so many different directions—just trying to make an impact.” What’s so compelling about Altum Insights, says Bork, is that “everybody can use this.”
Historically, ALGSA used meta.org to access papers to find clues into who to work with in the space. “But what Insights provides is much, much more than that,” Bork adds.
ALGSA is using Insights to “research all we can, broaden our horizons on what’s happening, and create this powerful network for doctors and researchers in the field.”
With Altum Insights, she says, “we’re able to see who is working in the space, getting grants, and applying for patents. That gives us knowledge that we would never have.”
On meta.org, Bork continues, “we couldn’t find anyone who was working on Alagille and its impact on the eye [an important area of ALGS research]. In Insights, we just found two scientists who are working on this specific problem who received an NIH grant in the last three years. Now we can invite them to our grant program and our symposium.”
When ALGSA reaches out to prospective researchers or clinicians, “we have all this background information that allows us to have a very educated conversation with them. We know going into it how we can help.” Bork concludes: “Altum Insights opens doors and allows us to engage scientists faster and more thoughtfully than ever before. It’s been amazing.”