A Historic First: The Kool Klinic Opens This April

We’re thrilled that a milestone moment is being met for the Koolen-de Vries Syndrome Foundation (KdVSF) and our global community—the very first Kool Klinic is officially opening this April in partnership with Children’s Hospital Colorado in Aurora, CO., USA. 💙

This multidisciplinary clinic has been years in the making, shaped by families, clinicians, and advocates who believe our community deserves coordinated, expert care in one place. April marks the beginning of something truly special.

Clinic Dates for 2026

The Kool Klinic will see patients on the following dates:

• April 22, 2026
• June 24, 2026
• July 22, 2026
• September 23, 2026
• October 28, 2026

Appointments are limited and scheduled in advance.

How to Schedule an Appointment

To request an appointment, please contact Ryleigh, our Nurse Coordinator, who will help guide families through the process:

📧 [email protected]

Ryleigh can answer questions about scheduling, preparation, and what to expect before your visit.

What to Expect at the Kool Klinic

The Kool Klinic is designed to provide comprehensive, coordinated care tailored specifically to individuals with Koolen-de Vries Syndrome. Families can expect:

• A care model centered on the unique needs of individuals with KdVS
• Collaboration among experienced clinicians familiar with the syndrome
• A supportive, family-centered environment
• Thoughtful coordination to help reduce the burden of navigating multiple appointments

Most importantly, the clinic is accessible to individuals of all ages, from children to adults.

Travel & Cost Concerns

We understand that travel—especially international travel—can feel overwhelming and expensive. We want to share a few important reminders:

• Insurance may cover clinic visits, depending on your plan and location. Families are encouraged to explore coverage options and speak directly with their insurance providers.
• For families traveling from outside the U.S., community-led fundraising can be a powerful tool to help offset travel expenses. Many families have successfully raised funds through local events, online campaigns, and community outreach.

If attending the Kool Klinic is a priority for your family, we encourage you not to let cost concerns stop the conversation before exploring available options. Reach out to the KdVS Foundation board members for help and ideas!

A Moment Years in the Making

This clinic represents more than appointments on a calendar—it represents progress, collaboration, and hope. The Kool Klinic is the first of its kind for the KdVSF, and we are incredibly proud to take this step forward alongside our community.

We can’t wait to welcome families this spring and begin this new chapter together.

If you have questions or want to see how you can support our inaugural Kool Klinic, please reach out to the KdVS Foundation at [email protected]. Together, we’re building something extraordinary.