We host a Wolfram syndrome research clinic once a year at the Saint Louis Children’s Hospital. I get many questions about this clinic. This is a research clinic and invitation only, and we don’t provide any treatment. We perform multiple tests to get information from patients. We have learned a lot from these research clinics, and I always appreciate the efforts of patients and all the medical and administrative staff.
I feel that now we need to start a consultation and follow-up clinic at our Children’s Hospital and Barnes-Jewish Hospital so that both pediatric and adult patients can come anytime and we can check their medical records and provide the necessary information to patients. This is probably an important stepping stone to enable us to start treating our patients with a FDA-approved drug.
We also need a platform for our patients to get to know each other and exchange information. As usual, I welcome any feedback from you