Hope is on the horizon for JdVS families.

Building community. Spreading awareness. Supporting research. Uplifting families.

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Our Mission

Building community, spreading awareness, and supporting research.

The Jansen de Vries Syndrome Foundation is committed to improving the lives of those affected by JdVS through building community, spreading awareness, and supporting research.

Your support makes our work possible. The Jansen de Vries Syndrome Foundation is a registered 501(c)(3) non-profit organization, and all financial donations are tax-deductible.

Support

By uniting families and sharing stories, we help newly diagnosed families connect with others and navigate unfamiliar territory together.

Resources

We connect families and providers with tools, guidance, and examples of what has helped individuals with JdVS thrive.

Research

Fundraising and partnerships help researchers better understand PPM1D and explore treatments that can improve quality of life.

Advocacy

We work to put JdVS on the map by increasing awareness, strengthening community, and helping more families get connected.

Newly Diagnosed

Understanding Jansen de Vries Syndrome

Learn the basics of JdVS, the PPM1D gene, and common questions families and providers ask early on.

Explore Resources

Find materials for patients, caregivers, and medical professionals in one evolving library.

Join the Community

Connect with other families, read stories, and stay close to the growing JdVS network.

Stories That Inspire

Family stories are a powerful reminder that support, progress, and joy can grow alongside diagnosis.