Thank you for considering a donation to Koolen-de Vries Syndrome Foundation. The organization is run entirely by volunteers and all donations help us continue to support our mission: To educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome and their families.

Donations allow us to promote and donate to research opportunities; design, produce and distribute new literature and awareness materials; run and maintain a website; help fund our Patient Advocacy Summits including providing travel stipends and hosting our medical professionals; and many other activities!

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

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!

Donations by Mail

Donations can be mailed to:

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

Download a donation form:

Donation Form

Current Needs

Develop a stem cell line from a child with KdVS ($ 10,000)
Blood collection for biomarker development from 10 KdVS patients ($10,000)
In-person clinical assessment per indivdiual with KdVS for natural history study ($1,000)
Translation of research assessments into Spanish, Italian, German, etc ($2,500)
Post-doctoral support for the continuation of CRISPR-based experiments in KdVS ($10,000)
Drug-repurposing screen to look for FDA-approved compounds beneficial for KdVS individuals ($5,000)
Collection of electroencephalograms (EEG) for KdVS individual to monitor seizure or abnormal brain activity ($2,000)
Hosting a scientific speaker at 2025 Summit ($1,500)
Conference registration and accommodations for the Foundation to attend Rare Disease conference ($500)

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Donation Total: $500 One Time

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