Travel Award Program
The purpose of the travel award program is to provide financial assistance to individuals and families who would otherwise face hardship attending the DESSH Clinic and Family Conference, held on
September 16-18, 2026 at Washington University and St. Louis Children’s Hospital. This clinic
provides critical care and support to individuals affected by DeSanto-Shinawi Syndrome.
Eligibility
Applicants must meet the following requirements to be considered for the travel stipend:
-
Register to attend the 2026 Clinic.
-
Complete the “Head-to-Toe” survey and upload genetic test reports on our RareX patient registry.
-
Be the primary caregiver, legal guardian, or patient diagnosed with DeSanto-Shinawi Syndrome.
-
Demonstrate financial need.(e.g., brief narrative, tax return, or signed statement)
-
Submit all required application materials by June 15, 2026.
Covered Expenses
Approved stipends may be used for:
-
Airfare, train, or bus travel to and from the clinic
-
Mileage reimbursement if traveling by car at the current IRS rate
-
Lodging for clinic-related nights
-
Parking or ground transportation to/from clinic
Stipend Award Amount
The maximum amount of each award will be determined by funding availability, distance, and
applicant need.
To learn more about the travel stipend award, please read our Award Protocol.
Completing the Application
Before beginning the application, you will need proof of clinic registration (confirmation email), proof of RareX head-to-toe survey completion, personal statement of financial need, and a description of how funds will be used with the total estimated travel cost.