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September 29 - October 1, 2022
St. Louis, MO

The DESSH Foundation is pleased to announce its first DESSH clinic in conjunction with Dr. Marwan Shinawi, Washington University School of Medicine, and St. Louis Children's Hospital. The goal of our clinic is to advance research efforts toward a cure for DESSH.

DESSH Clinic: Welcome



The clinic will involve patient visits with up to four specialist doctors who will collect and store patient data to inform clinical research of the syndrome. The benefits are two-fold. First, the data collected will continue to be measured through follow-up interviews and/or visits, creating a natural history of the syndrome over a long period of time. Second, the clinic will give specialists the opportunity to treat many DESSH patients, creating DESSH "experts" in their field. The clinic will also include an opportunity for patients to provide blood and/or tissue samples to facilitate pre-clinical research. Finally, there will be an educational conference with speakers for parents in attendance, and opportunities for social events among DESSH families.


As an entirely patient-led organization, it is our efforts that will find the best treatments and lead to the best outcomes for our children. Patient data is needed to advance DESSH research efforts. Dr. Amanda Smith, member of The DESSH Foundation's medical advisory board and scientific researcher, created a guide to help all of us understand why research is important. It is my hope that you read the Research Guide and that you will consider the impact participating in the DESSH Clinic will have towards managing, treating and ultimately curing DESSH.


The DESSH Foundation has been fundraising for this event and is pleased to share the blood and/or tissue sample collection and storage, and an educational conference will be provided at no cost. Patient visits with doctors will be covered in conjunction with your medical insurance, should you have coverage.

The cost of travel and lodging will be your responsibility. At this time we have secured a group housing location near the university that offers cost savings should you wish to stay there. Cost will be per person and will be based on the number of people in your party and the number of families who wish to lodge there. There is room for up to 10 families, and will include a private bathroom per family. The accommodations can be found here. Otherwise, you are free to secure your own accommodations.

DESSH Clinic: List
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