St. Louis Families Unite for Rare Disease Day 2026; Take Part Foundation Advances Critical Genetic Testing and Research

On February 28, Rare Disease Day raises global awareness for 300 million people living with rare diseases. In St. Louis, the Take Part Foundation leads local advocacy efforts to support children and families affected by rare conditions.

St. Louis Families Unite for Rare Disease Day 2026 as Take Part Foundation Advances Critical Genetic Testing and Research. Skate Under the Stars returns March 3

The Take Part Foundation is a St. Louis-based 501(c)(3) nonprofit that identifies and funds medical research for rare pediatric conditions.

You can honor Rare Disease Day by attending Skate Under the Stars on March 3; an inclusive night of ice skating and fun for kids of all ages and abilities. All Images by Take Part

 On February 28, communities around the world will recognize Rare Disease Day, a global movement to raise awareness for the more than 300 million people living with a rare disease, half of them children. In St. Louis, the day shines a spotlight on the life-changing work of the Take Part Foundation, a local nonprofit founded by parents who understand the urgency of rare disease advocacy firsthand.

The Take Part Foundation was created by Maria and Matt Granados after their daughter, Natalie, was diagnosed with a rare genetic disorder. Like many families, the Granadoses faced a long, uncertain diagnostic journey, one shared by thousands of families navigating rare and undiagnosed conditions. Their mission is to fund research, support families, and ensure that kids like Natalie receive the testing they need to find answers.

Since its founding in 2021, the Take Part Foundation run by Matt & Maria Granados raised more than $500,000 to fund crucial research and close the gap for families who are denied coverage for testing by their insurance.

“Rare Disease Day is about visibility, but it’s also about action,” said Maria Granados, co-founder of the Take Part Foundation. “Families don’t just need awareness, they need answers. Genetic testing can be life-changing for a child and their care team, but too often it’s out of reach. Our mission is to help close that gap and make sure families aren’t facing this journey alone.”

Rare diseases are often difficult to diagnose, under-researched, and under-funded. Many children wait years for an accurate diagnosis, delaying treatment and access to critical support. Take Part Foundation works to change that reality by funding medical research, supporting access to genetic testing, and helping families share their stories – known as Warrior Profiles – to accelerate progress.

“Genetic testing can change everything for a child. It can mean the difference between years of uncertainty and a clear path forward,” said Matt Granados, co-founder of the Take Part Foundation. “But too many families are forced to delay or forgo testing simply because they can’t afford it. We believe answers shouldn’t depend on a family’s finances, and that’s why expanding access to genetic testing is at the heart of our work.”

As part of Rare Disease Day observances, Take Part Foundation and United for Rare will host the 4th annual Skate Under the Stars, a family-friendly celebration honoring the local rare disease community.

Skate Under the Stars
Tuesday, March 3, 2026
5:30–7:30 p.m.
Centene Community Ice Center
Tickets: $20 – free for rare disease warriors!

The evening will include inclusive ice skating, hot chocolate, face painting, and activities for all ages, with mobility aids and wheelchairs welcome on the ice. St. Louis Blues’ very own Louie will also make an appearance! The event offers families of children with rare diseases a chance to connect, celebrate, and find community while raising funds to support rare disease research and genetic testing.

“Skate Under the Stars is about joy, connection, and showing families they’re not alone,” said Kristin Lashoff, founder of United for Rare and mother to a child with a rare disease. “For one night, parents can look around the rink and see a community that understands their journey, while making a real impact for children who need answers.”

Kristin and her husband Matt Lashoff, a former professional hockey player, are longtime advocates for rare disease families and supporters of inclusive events that bring awareness and hope to the community.

Those looking to honor Rare Disease Day can support Take Part Foundation by attending Skate Under the Stars, sharing rare disease stories, or donating to help fund genetic testing and research that could change a child’s future.

About the Take Part Foundation
The Take Part Foundation is a St. Louis-based 501(c)(3) nonprofit dedicated to helping children with rare and undiagnosed diseases thrive. Founded by parents Matt and Maria Granados after their daughter Natalie’s diagnosis, the foundation funds medical research, supports access to genetic testing, and empowers families to tell their stories in the fight for answers and treatments. Learn more at https://take-part.org/.

About United for Rare
United for Rare is an online community supporting parents and caregivers of children living with rare diseases. The organization provides resources, shared stories, and connection for families navigating complex and often isolating journeys. Learn more at https://www.unitedforrare.com/.

Kerry Andersen
1905 New Media

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