Case Studies

Alagille Syndrome Alliance Uses Altum Insights to Find the Right Researchers

Alagille Syndrome (ALGS) is a rare genetic disorder that can affect multiple organ systems of the body including the liver, heart, skeleton, eyes, and kidneys. The current estimated incidence of ALGS is approximately 1/30,000–1/45,000.

The Alagille Syndrome Alliance (ALGSA) is an international nonprofit started in 1993, representing the ALGS community. With a staff of two based in the US and abroad comprising members from around the world, the ALGSA team is driven by its mission to make living life with Alagille Syndrome easier.

Joining Altum

ALGSA has seen donor contributions steadily increase for several years. In 2021, the team at ALGSA determined that to find the right researchers and maximize the impact of their growing research grants program, they needed to move to a grants management platform optimized for scientific endeavors. ALGSA became an Altum client in 2021.

Like all funders who work with Altum, ALGSA got access to ProposalCentral, which they are using to run their 2022 Collaborative Research Grant Program, as well as access to Altum Insights and Altum Analytics. Altum Insights is a deep text search and visualization tool that lets grant makers and institutions see the connections and impact of program funding across the entire research lifecycle. Altum Analytics is a data reporting platform that enables grant makers to explore their ProposalCentral funding data and make data-driven decisions.

Insights has been a gold mine.


Executive Director, ALGSA

Creating Connections and Gathering Insights

As a rare-disease funder, ALGSA faces some unique challenges. First, the pool of researchers who have experience working on ALGS is small. Second, the community of ALGS scientists, patient advocates, and clinicians is fragmented. Finally, ALGSA stands alone as the only nonprofit dedicated to this cause.

To overcome these challenges, ALGSA turned to Altum. “We want to create a scientific research network pulling in and engaging scientists from around the world. ProposalCentral and Insights will help us do this,” said Roberta Smith, President of ALGSA.

To create this network, ALGSA has been using Altum Insights. For example, simply by searching on “Alagille Syndrome,” ALGSA can find new researchers, explore any awarded patents, and see every NIH grant that’s been made in this area. “Insights has been a gold mine. It allows us to fast track what we need to do,” says Cher Bork, Executive Director of ALGSA.

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 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, 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.”

About Altum Insights

Built on top of more than 200 million data points, Altum Insights visualizes the connections between programs, grants, publications, and follow-on funding across the entire funding lifecycle. Research professionals can determine how much has been funded in each area of focus, which programs or publications are linked to each award, and all points of impact that resulted from their funding.

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Alagille Syndrome Alliance taps
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Altum Insights for Funders

Altum Insights is a deep text search and visualization tool that can be used with ProposalCentral or independently. It allows research funders to see the connections and impact of their grants and awardees across the entire research lifecycle.

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