In 2019, Hope for HH launched a comprehensive HH Comorbidity Survey. The goal is to better understand the co-existing or comorbid conditions and symptoms that individuals were experiencing along with HH, but perhaps not receiving an official diagnosis for. In this series of blogs, we plan to share some of the initial findings and perhaps…
Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
We are only a week into the HH Comorbidity Survey and the participation has been amazing! We hope to have at least 200 participants by the end of July and it looks like we can certainly make that number and perhaps more! A huge thank you to all who have already participated! Today I want…
Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
While other hypothalamic hamartoma (HH) comorbidities have been studied in more depth – the psychiatric and behavior components of this rare syndrome have not. We, as a community of patients and caregivers, have long struggled to understand the reasoning behind what we are told are conditions that are “likely” related to HH and which ones…
Hope for HH is co-sponsoring the 4th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians and researchers – in Washington DC Sept. 12-14. The Symposium aims to identify gaps in understanding and opportunities for future HH research studies and collaborations to improve diagnosis, treatment and care of both the seizures…
Hope for Hypothalamic Hamartomas (HH) is proud to partner with the Child Neurology Foundation (CNF) to conduct a brief survey to understand the caregiver’s experience when it comes to managing behavior in children with neurologic conditions. For many families with children and young adults with HH – dealing with the behaviors can be even more…
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