The challenge: collaboration without a single source of truth
Cure HHT’s work depends on getting busy researchers and clinicians to share updates, documents, and decisions—often across institutions and time zones. That’s hard enough. It becomes significantly harder when information lives in long email threads, scattered files, and spreadsheets, and no one is sure where the “latest” version is.
They’d already tried to solve this once: a custom-built hub created before Cassi joined the team. But it didn’t stick. The experience wasn’t intuitive, participation stayed in email, and important information became difficult to track down later.
As Cassi put it: “Everyone just stayed on email… and I actually still can’t find all of the original information.”
At the same time, Cure HHT’s research efforts were expanding. They sponsor and run multiple studies, partner with academic institutions and biopharma, and bring the field together through an international scientific conference. They needed a practical way to bring everyone into one place—without making collaboration feel like extra work.
What they needed: something a small team could run
Cure HHT is a small nonprofit. Cassi didn’t have a web developer on standby—and she didn’t want a platform that only worked if you had a technical team behind it.
She was looking for a true home base: a place where researchers and clinicians could collaborate, access shared resources, and stay current—without a steep learning curve or constant maintenance.
Why Hivebrite: intuitive for busy people, structured enough to keep things organized
The goal wasn’t just launching a platform. It was launching one that people would actually use.
Cassi described Hivebrite as “a very easy user interface,” emphasizing that even people who aren’t tech-savvy could navigate it confidently. Just as importantly, it gave Cure HHT enough structure to keep conversations, documents, and decisions organized over time—so information didn’t disappear into inboxes.
Hivebrite also let them start simple and build from there: “If you don’t have a lot of skills, you can build something that’s good, and if you do have skills, you can build something that’s really cool.”
Getting it working: start with real users, then build habits
To make sure the Hub would succeed where the previous one failed, Cassi began with a practical test: a small beta group with clear activities and feedback—intentionally including people who weren’t tech-savvy.
Once that went well, she focused on programming that created a reason to show up. One early example was a research roundtable hosted as an event inside the Hub, with Zoom embedded. Engagement was strong, and it became a model she plans to repeat.
Just as importantly, Cure HHT made a clear call on behavior: they weren’t going to run two systems in parallel. That single decision helped the Hub become the default place for work, not an optional extra.
How Cure HHT uses Hivebrite today
Cure HHT now uses Hivebrite as a day-to-day workspace for research collaboration and communications.
A home for working groups and committees
The Hub supports roadmap working groups, governance and steering committees, and planning committees—keeping discussions, files, and decisions organized in one place.
News and publications that keep the field current
Cassi posts weekly roundups of new publications and key updates, helping members stay on top of a fast-moving field. Members can also submit news—new publications, grants, promotions—so the Hub stays active and community-driven.
An active coordinators group across clinical centers
Nurse coordinators and clinical teams use the Hub to share information, ask questions, and support one another—building stronger connections across centers.
A conference experience built inside the community
Cure HHT used a dedicated group as their scientific conference “app,” sharing the agenda, abstracts, speaker bios, links, and networking in one place. The group stayed active after the event as a home for recordings and follow-ups.
Secure Groups for clinical trial workflows (a key use case)
For Cure HHT, Groups aren’t just for networking—they’re part of how research gets done.
When sponsoring a Phase 3 clinical trial, they needed a reliable way to share sensitive materials across clinical sites and with analysis partners. As patients complete follow-up and exit interviews, recordings need to be transferred from each participating site for transcription and analysis. Email and ad-hoc file sharing weren’t a fit—this required a secure, controlled process.
Hivebrite Groups gave Cure HHT the structure and security to operationalize that workflow:
- Private groups per clinical site, with access limited to the right people
- A clear, centralized place for instructions and standardized handoffs
- The ability to upload and securely transfer recordings without scattering files across inboxes
The impact: less chasing, more progress
For Cassi, the biggest change is simple: it’s easier to run the work.
Instead of re-sending attachments and hunting through email threads, she can point people to the right group and the right document—once—and know it will be there when someone needs it.
“I posted it in the group, you can go look at it… all of that information is here… and not have to reattach files for everyone.”
Hivebrite also helps her move faster when coordinating across a distributed network. She uses the member directory to find the right person in the right place and connect quickly.
“I use it all the time… ‘do we have someone in Melbourne?’… and then I grab their email really fast.”
Why they recommend Hivebrite
Cassi’s recommendation comes down to practicality: Hivebrite makes it possible for a small team to build a shared space people will actually use—and keep it running without constant manual effort.
She also values the automations and branding tools, which reduce repetitive work when publishing updates and communications.
“I love how you can build automations… so I’m not having to go in… and do all of that all the time.”
