Help us directly support the 2026 DESSH Clinic & Family Conference

We are asking a few of our key partners to rally their friends, family, and networks to support the upcoming DESSH Clinic and Conference. By becoming a fundraiser for The DESSH Foundation, you will help more individuals living with DeSanto-Shinawi Syndrome access care.

Funds raised directly support the 2026 DESSH Clinic & Family Conference, where:

• Patients are seen by multiple specialists in one coordinated setting—often the first time they meet clinicians with real experience in DESSH
• Families meet other individuals with DESSH—often for the first time ever, reducing isolation and building lasting connections
• Patients contribute clinical data, medical histories, and biosamples to an ongoing natural history study, which serves as the foundation for future treatment development
• Physicians evaluate multiple DESSH patients in one place, allowing them to build real expertise more quickly and improve care for the entire community

This is not just a medical visit—it is a concentrated effort to improve care, collect critical data, and accelerate research.

Starting a fundraiser is easy to do, and it's fun! We'll even give you all the tools you'll need to make a difference. With your help, we can build a growing, well-documented patient dataset that enables meaningful research and informs future treatments; a network of clinicians who are becoming true experts in DESSH; and a connected community of families who are no longer navigating this condition alone. Thanks for your help!