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DESSH Family Clinic

Next Clinic: Fall 2024
St. Louis, MO

The DESSH Foundation was pleased to hold its first DESSH clinic in conjunction with Dr. Marwan Shinawi and Washington University School of Medicine, at St. Louis Children's Hospital. The goal of the clinic was to advance research efforts toward a cure for DESSH and allow an opportunity for families to connect. It is a goal to hold this clinic annually.


What is the DESSH Clinic?

The clinic involves patient visits with up to four specialist doctors who 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 includes an opportunity for patients to provide blood and/or tissue samples to facilitate pre-clinical research. Finally, there are educational conferences with speakers for parents in attendance, and opportunities for social events among DESSH families.

Why Participate?

As an entirely patient-led organization, it is our efforts that find the best treatments and lead to the best outcomes. 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 the Foundation's hope the Research Guide will motivate caregivers and patients to consider the impact participating in the DESSH Clinic can have have towards managing, treating and ultimately curing DESSH.

What is the financial commitment to attend?

The DESSH Foundation has been fundraising for these events 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 patient medical insurance, should you have coverage. The cost of travel and lodging will be the caregiver's responsibility. 

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