Featured Resources
Here are some of our favorite resources for pediatric care teams. Check back and get in touch for more!
Courageous Parents Network
Courageous Parents Network presents educational resources in an array of formats with a singular goal: to give parents confidence that they are being the best possible advocate for their child. Through this work and in partnership with clinicians, we seek to transform the care experience both delivered and received.
Zach's Bridge
Zach’s Bridge helps ease the journey by providing parents and caregivers with connection, compassion and support. We match trained peers with support seekers to listen and engage in thoughtful conversation, shared experiences and curated resources.
The Butterfly Pig
The Butterfly Pig creates interactive, child-friendly medical toys that make healthcare approachable, empowering, and a lot less scary for kids.
Broadway Hearts
Broadway Hearts brings music, joy and moments of Broadway magic to hospitalized children bravely facing medical challenges. Broadway Hearts performers transform hospital rooms and virtual visits into uplifting stages where children and their families can pause from their medical challenges, share laughter, and create memories filled with music and joy.
EveryLife Foundation
The EveryLife Foundation for Rare Diseases is powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.
AAMDS
AAMDSIF empowers patients and their families, invests in research that speeds the search for new treatments and potential cures, promotes high-quality care by educating healthcare providers, and ensures our patients’ voices are heard through awareness and advocacy.
Our Resources
The FUN LAB Framework
In this talk, Lindsey Wahlstrom shares the lessons she learned as both a clinical research professional and a mother navigating her daughter Rona’s rare disease treatment. With six powerful ideas for reimagining pediatric research, she calls for a balance between the magic of science with the magic of life.
Getting to a Diagnosis
Getting to a diagnosis, and then to a treatment plan, is both chaotic and maddening in how long it can take to get answers. When someone you love is sick, you just want to do something. And often, the rate-limiting step to action is access to the right information at the right time.
2025 Impact
When we founded Rona’s FUN LAB, we knew we didn’t want to build something loud or rushed. We wanted to build something thoughtful. Something informed by lived experience, shaped by the realities of care teams, and flexible enough to honor the uniqueness of every family’s journey. This past year was about laying that foundation.