Donations

Make a Gift. Change What’s Possible for Families Living with KdVS.

Families living with Koolen-de Vries Syndrome often face a long and difficult path to find care, answers, and connection.

You can change that today.

Your donation helps expand access to coordinated care, strengthens a growing community of families and advocates, and fuels the research that is moving us closer to better treatments and support.

Because of supporters like you, we are able to:

  • Advance critical research that deepens understanding of KdVS
  • Provide families with resources, connection, and support
  • Host Patient Advocacy Summits that bring families and experts together
  • Increase awareness so no family feels alone in this journey

This work is powered by a dedicated community and the generosity of people who believe in a better future for those living with KdVS.

Make your gift today and be part of that impact.

We are so thankful to have the support of the Koolen-de Vries Syndrome community!

If you’re having difficulties submitting a donation, please try to delete your cookies and try again OR send an email to [email protected]

Online Donations

Make a donation online securely and conveniently using PayPal. You do not need to be a PayPal member to complete your donation. All major credit cards are accepted.

Would you like to make your donation “In Honor” or “In Memory” of someone special? Select that option and we will let your special family or friend know about your gift!

Donate Today

Donations by Mail

Donations can be mailed to:

Koolen-de Vries Syndrome Foundation
609A Piner Road
Suite 319
Wilmington, NC 28409

Please make checks payable to: Koolen-de Vries Syndrome Foundation

Download Donation Form

Current Needs

You can make an impact at every level:

$500 helps bring our team to rare disease conferences to share knowledge and accelerate progress

$10,000 supports critical research efforts like developing stem cell lines or advancing CRISPR-based studies

$20,000 funds biomarker research through blood collection from KdVS patients

$29,000 sustains our Natural History Study, building the data needed for future treatments

$40,000 advances drug repurposing and biomarker discovery

$45,000 helps establish research models to better understand treatment timing and effectiveness

$60,000 supports access to coordinated care through the Kool Klinic

$80,000+ drives major breakthroughs like genetic research, plasma biomarker development, and EEG monitoring to better understand brain activity in KdVS