Koolen-de Vries syndrome (KdVS) affects real people—children, adults, parents, siblings and caregivers—who are navigating a rare and often isolating diagnosis. For many families, answers are limited, resources are scarce and the future feels uncertain.
The Koolen-de Vries Syndrome (KdVS) Foundation exists to change that.
As a small nonprofit serving a rare disease community, we do not have access to the level of government funding or large institutional support available to more common conditions. That reality makes fundraising not just important—but absolutely essential.
Every dollar raised allows us to push research forward, close critical knowledge gaps, and ensure individuals and families impacted by KdVS are seen, supported, and never alone.
Without fundraising, progress slows. With it, hope grows.
Where Your Support Goes
We take our responsibility to donors, partners, and families seriously. Funds raised by the KdVS Foundation are stewarded with care and purpose, ensuring maximum impact across research, education, and community support.
Your support helps fund:
Scientific and clinical research to better understand Koolen-de Vries syndrome, improve diagnosis, and advance potential treatments
Natural history studies that generate essential data for clinicians, researchers, and future therapeutic development
Education and evidence-based resources for families, caregivers, educators, and healthcare providers
Community programs and convenings that connect families, elevate lived experience, and foster collaboration
With a lean operational structure, we prioritize mission over overhead. Contributions are directed where they matter most—advancing research and directly supporting individuals and families affected by KdVS.
The Impact of Your Gift
For rare diseases, progress is built one step—and one contribution—at a time.
Your generosity helps:
Accelerate meaningful research and data collection
Empower families with knowledge, connection, and advocacy tools
Equip clinicians and researchers with the insights needed to focus on KdVS
Build a stronger, more connected global KdVS community
Whether given by an individual donor, foundation, or corporate partner, each investment fuels momentum and brings us closer to better understanding, improved care, and brighter outcomes.
Partner With Us
We welcome partnerships with corporations, foundations, and mission-aligned organizations that share a commitment to advancing rare disease research and improving patient and family outcomes.
Strategic partnerships with the KdVS Foundation support:
Research innovation and data-driven discovery
Expanded education and outreach
Long-term sustainability for rare disease advancement
Together, we can create measurable impact and lasting change.
Interested in partnering with us?
Email: [email protected]
Ways to Give
Your support—at any level—makes a difference.
Make a one-time gift to support immediate research and community needs
Become a monthly donor to provide consistent, sustaining support for our programs
Give in honor or memory of a loved one, creating a meaningful tribute with lasting impact
Corporate and foundation partnerships help scale research initiatives, expand programs, and drive long-term progress
Every gift is a commitment to advancing science, strengthening families, and building a future with more answers and more hope.
Quick ways to take action:
Fund Research
Become a Monthly Donor
Honor or Remember a Loved One
Partner With Us
Join Us in Making a Difference
Every advance in rare disease research begins with people who care.
Whether you choose to donate, volunteer, partner with us, or help spread awareness, your support plays a vital role in shaping the future for individuals and families affected by Koolen-de Vries syndrome.
Together, we can move research forward—and ensure no family walks this journey alone.
