This year’s topic is: Hypothalamic Hamartoma: A Lifelong Syndrome! On the first day, we will focus on expanding our understanding of this complex syndrome across a life span. In the past, there has been significant emphasis on improving treatment modalities. This year, we hope to expand that focus and develop a set of comprehensive diagnosis, treatment, and management guidelines for HH inclusive of both seizures and comorbidities for all ages. To this end, we have invited guests that are leading experts in the field of Natural History Studies and Big Data Collections. We hope that sharing their knowledge from other epilepsy syndromes will help us all understand what is needed to establish an international study to unite the patient and research community, enhance overall quality of care, and improve treatment outcomes. We aim to establish new collaborative projects that will expand our limited understanding of the natural course of HH syndrome.
The second day provides a high level and still detailed overview about our current knowledge on several topics:
- How does HH and its presentation change during development and with age?
- What is needed to provide the best comprehensive care to patients affected by HH?
- When and which surgical intervention is the best?
Patients and families are counting on us to tackle the many unanswered questions that surround this rare disorder. We sincerely appreciate your time, dedication, and willingness to travel in such uncertain times!
For more information checkout the symposium website and 2nd day registration page here.
