Making the rare-disease journey easier to navigate.
Kellum Labs is building a mobile-first platform to get accurate, up-to-date rare-disease information into the hands of the people who need it most—families and caregivers who often have the least time to search for it. Find trusted information, understand what comes next, and receive important updates directly on your phone without having to continually check dozens of disconnected sources.
The current system is asking too much of families.
“Even when you are willing to do the research, finding the right answer can mean piecing together an ecosystem that was never designed as one system.”
Kellum Labs was born from our firsthand experience navigating a rare-disease diagnosis as parents. During some of the most exhausting and uncertain days in the NICU, we remember going back to the hotel at night, opening a laptop, and trying to piece together information from different websites, organizations, research papers, and parent communities. At a time when families already have so much competing for their attention and emotional bandwidth, finding trustworthy information shouldn’t feel like another full-time job. We kept thinking how different it could have been to have one trusted place on our phones—to understand what came next, find the right resources, keep up with research, and connect with people who could help. Kellum Labs was started to help build that experience for other families.
Four pillars. One easier way to navigate the journey.
Kellum Labs is developing the mobile platform in partnership with families, advocacy organizations, researchers, clinicians, and other stakeholders—bringing their perspectives together to build a trusted, practical tool that works for the people who use it and the organizations that support them.
My Journey
Personalized, life-stage-aware next steps after diagnosis, including guided pathways to registries, trusted resources and important follow-up actions.
My Community
Find specialists, advocacy organizations, local events, Facebook groups and privacy-conscious peer connections that may be relevant to your family.
My Research
AI-powered search across trusted sources, plain-language summaries and links back to the original information. Choose what matters to your family and receive important research and treatment updates directly on your phone.
My Trials
Discover potentially relevant studies, understand public eligibility criteria, locate trial sites and connect directly to official study teams and enrollment pathways.
Helpful resources already exist. We bring them together in one place.
Families shouldn't have to know which website, organization, database or group to search first—or remember to keep checking them for something new. The platform brings trusted, up-to-date information together in one clear experience, connects families directly to the original source, and can notify them on their phone when something important changes.
Spend less time searching. Stay informed about what matters.
Parents and caregivers already have enough competing for their time and attention. The platform keeps watch across trusted sources and brings relevant updates, reminders and opportunities directly to their phone.
Registry follow-through
Help a newly diagnosed family understand how to register, then provide a simple reminder when an annual update may be due and guide them back to the official registry workflow.
Events & communities
Surface relevant local and virtual events, support groups and Facebook communities, with quick links to learn more, register or request access.
Never miss an important update
Families choose the research, trials, resources, events and topics they care about. When something meaningful changes, a notification comes directly to their phone—no need to remember to go looking for it.
Designed to strengthen the organizations families already trust.
The best version of this platform is built with families, advocacy groups, research organizations, clinicians and researchers—not around them.
Start with PWS. Build carefully for rare disease more broadly.
Our vision is a mobile-first family navigator that makes the most accurate, current and relevant information easier to reach when families need it. Through trusted sources, AI search, personalized notifications, reminders and community discovery, we want families to spend less time searching and more time focused on the people who matter most.