Rona's FUN LAB Launches Rare Disease Resource Directory to Expand Access to Rare Disease Support
New resource connects families and care teams to critical advocacy groups, services, and everyday support often overlooked in rare disease care
New York, NY, May 4, 2026— Rona's FUN LAB today announced the launch of its Rare Disease Resource Directory, a centralized resource designed to help families and healthcare providers quickly access trusted support, advocacy organizations, and essential services for rare diseases.
For families navigating a rare diagnosis, access to information is often inconsistent and fragmented. While more common conditions benefit from established support infrastructures, rare disease communities frequently lack visibility, leaving families to navigate complex care journeys without awareness of available resources.
Rona's FUN LAB created this Directory to address that gap.
“Two families can receive the same diagnosis and have completely different experiences,” said Lindsey Wahlstrom, Founder of Rona's FUN LAB. “After our daughter Rona’s diagnosis, we saw firsthand how access to support can shape everything. We were able to find the advocacy group, connect to resources, and get second opinions right away. Another family with the same diagnosis didn’t have that—simply because they didn’t know it existed. That’s the gap this resource is meant to close.”
The Directory serves as a one-stop destination for discovering rare disease advocacy groups, support networks, and practical resources that extend beyond clinical care. It is designed primarily for healthcare providers—including child life specialists, social workers, and care teams—who are often responsible for guiding families but face significant constraints on time and capacity.
Hospitals may have only a handful of social workers supporting hundreds of families, many of whom require coordination of complex needs such as treatment logistics, travel, and housing. Expecting care teams to maintain comprehensive knowledge of every rare disease resource is not realistic.
Rona's FUN LAB simplifies that process by organizing and centralizing access to information that is often difficult to find.
Key features of the Directory include:
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Centralized access to rare disease advocacy groups and support organizations
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Curated resources spanning emotional support, education, and second-opinion pathways
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Practical support categories, including transportation, housing, and adaptive clothing
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Provider-informed structure, with filters and organization designed to support clinical workflows
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Open accessibility, enabling both care teams and families to navigate and benefit from the resource
While built with providers in mind, the Directory is intentionally accessible to families and caregivers, ensuring that support is not limited by referral pathways or awareness.
The launch will be supported through targeted outreach within established professional communities, including networks of child life specialists and care providers, where peer-to-peer sharing plays a critical role in awareness and adoption.
Rona's FUN LAB is also expanding the Directory through ongoing collaboration with advocacy groups and exploration of additional data sources to ensure comprehensive and up-to-date coverage.
“This is about making sure families don’t have to rely on chance to find support,” Wahlstrom added. “Access to resources should be consistent, visible, and available from the start.”
To explore the Rare Disease Resource Directory, visit www.ronasfunlab.org/resource-directory
About Rona's FUN LAB
Rona’s FUN LAB is a nonprofit organization founded by parents who lived inside the pediatric healthcare system, and saw firsthand how much children and families are asked to carry. We bring together lived experience, clinical insight, creative thinking, and deep respect for medicine to help improve how care is delivered to critically ill children. Our work is not about criticizing healthcare. It is about strengthening it by making space for joy, honesty, nuance, and humanity alongside scientific excellence. To learn more, visit www.ronasfunlab.org.
Media Contact:
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