Take Part Foundation Launches Storytelling Platform to Champion Children with Rare Diseases
The Take Part Foundation is a 501(c)(3) nonprofit dedicated to helping children with rare and undiagnosed diseases thrive.
The Take Part Foundation was founded by Matt and Maria Granados, parents of Natalie, who suffers from a rare genetic disorder, PYROXD1.
Take Part volunteers raise funds for research, to provide resources for rare and undiagnosed families to better tell their stories and assist with access to genetic testing needed for a diagnosis.
Warrior Profiles include important medical information to aid doctors, researchers, and caregivers
He told me, 'I think this website just saved your daughter’s life.' That moment changed everything for us.”
ST. LOUIS, MO, UNITED STATES, November 3, 2025 /EINPresswire.com/ -- The Take Part Foundation, a St. Louis-based 501(c)(3) nonprofit that identifies and funds medical research for rare pediatric conditions, today announced the launch of its “Warrior Profiles.” The public webpages spotlight the unique journeys of children living with rare and undiagnosed conditions. With full consent from each child’s parent or caregiver, these free-to-create profiles offer a centralized, shareable resource that includes the child’s story, their medical background and information about their condition. The profiles may also provide essential information during emergency hospital visits and accelerate research by giving doctors and researchers easier access to case details that could uncover critical connections.— Matt Granados, Take Part Foundation Co-Founder
The concept for the Warrior Profiles originated from the firsthand experience of the nonprofit’s cofounders. From an early age, Matt and Maria documented their daughter Natalie’s health issues, which were mostly related to her mobility. However, in 2020, her health took a turn for the worse. Natalie was hospitalized for severe respiratory distress and came dangerously close to losing her life. During this ICU visit, Matt and Maria shared a webpage they had created. It served as a centralized hub, detailing Natalie’s years of medical history, doctors’ notes, symptoms, test results, specialists she had seen and her unique story.
“I showed Nat’s webpage to the lead ICU doctor and he nearly came to tears,” said Matt Granados, cofounder of the Take Part Foundation. “With notes from doctors over the years of Nat’s symptoms, they knew to avoid medication that could have worsened her condition and placed her in a coma. He told me, ‘I think this website just saved your daughter’s life.’ That moment changed everything for us.”
While Warrior Profiles were built with children in mind, anyone navigating a rare or undiagnosed condition can create a profile for free. Accessible at take-part.orkg/warriors, the platform allows families to create personalized pages for their child, with the option to add photos, videos, medical records, doctors’ notes and more. These profiles can help teachers, babysitters, caregivers and healthcare providers quickly understand each child’s unique needs, while giving parents full control over how their child’s story is told. The HIPAA-compliant platform was built to empower — not replace — medical conversations, making it easier for families to advocate for their child in times of need.
“Families of rare disease warriors already carry so much, managing complex care, answering endless questions and fighting for answers,” said Maria Granados, cofounder of the Take Part Foundation. “We know how exhausting it is to repeat your child’s story over and over. With Warrior Profiles, we want to give families a simple yet profound way to say, ‘Here’s who my child is, and here’s what they need.’” Families are encouraged to create a profile and email the foundation at Maria@Take-Part.org with questions or feedback.
To learn more about how to “take part” in the lives of children with rare pediatric diseases, please visit take-part.org/. To create a free Warrior Profile, visit take-part.org/warriors/.
About the Take Part Foundation
The Take Part Foundation is a 501(c)(3) nonprofit dedicated to helping children with rare and undiagnosed diseases thrive. Too often, the research needed to advance life-altering therapies for children with rare conditions lacks adequate funding. Take Part funds research, provides resources for rare and undiagnosed families to better tell their stories and assists with access to genetic testing needed for a diagnosis. The nonprofit was founded by Matt and Maria Granados, parents of Natalie, who suffers from a rare genetic disorder, PYROXD1. The foundation empowers families of children with rare diseases, allowing anyone to “take part” in fighting for what’s possible. Since its founding, the nonprofit has raised more than $750,000 in support of rare disease research. Learn more at https://take-part.org/.
Kerry Andersen
1905 New Media
+1 337-292-0725
kerry@1905newmedia.com
Visit us on social media:
LinkedIn
Instagram
Facebook
YouTube
X
WHY: Take Part in the Fight for Possible - Take Part Foundation
Legal Disclaimer:
EIN Presswire provides this news content "as is" without warranty of any kind. We do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author above.
