Of kids with rare diseases will NOT see their 5th birthday.
Known rare diseases
Of rare diseases have no FDA approved treatment
Americans are diagnosed with a rare disease
Rare is more common than you think.
More than 30 million children and families suffer from rare pediatric diseases. The Take Part Foundation was established to raise money to support those researchers who work tirelessly and endlessly to find answers.
Unfortunately, traditional funding sources for these projects simply don’t exist due to the small number of children impacted. As a result, research for cures or advances for these rare pediatric diseases often experience stops and starts that push progress off by years, if at all. Take Part bridges the funding gap so researchers can make enough progress to publish and apply for larger grants that sustain their research.
No longer do families need to feel sidelined and helpless, dependent on others to do something – anything to make progress that might help their child. These children are warriors, fighters—so are we. Join us and “take part” in the fight.
We take a structured, project-based approach to funding research, ensuring each initiative has a clear plan, milestones, and expert review for validity. By sharing these steps, we bridge communication gaps between donors and researchers, fostering collaboration and advancing progress in rare pediatric diseases.
We provide funding for families denied genetic testing by insurance, ensuring children with rare or complex conditions can get the diagnoses they need. By partnering with organizations like St. Louis Children's Hospital to cover these critical tests, we help families find answers, access proper treatment, and secure the care their children deserve.
Our Warrior Pages give families a simple way to share their child’s story, helping educate the community and advocate for their needs. These profiles have proven life-saving, providing critical information in emergencies and offering a powerful tool for support and awareness.
Rare Disease Research
Each project is required to present a research case description, anticipated funding needs, project timing and proposed milestones. We also suggest that the team applying have 20% of the initial project funding in place. Our Take Part Foundation advisors (comprised of doctors, business executives and leaders within partner organizations) have the opportunity to review the application for validity of project model and medical assumptions, financial evaluation and proof of concept.
Once accepted, each Take Part project is assigned a project manager by the foundation. Our project manager will be responsible for oversight, including collaborating to set agreed upon project milestones and metrics, ensuring the receipt of updates on results, as well as allocating project funding to the designated institution. It’s important to note that funding will only be issued to the institution affiliated with the project; funding will not be given directly to the research team or to any individual on the team.
With nearly 30,000,000 people affected in just the United States with a rare disease, there is a high likelihood that YOU know someone who is affected by a rare disease. When we saw these numbers, this is when we realized that RARE IS MORE COMMON THAN YOU THINK.
We have found there are 3 ways you can Take Part in this Fight For Possible!
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