Hope for HH is co-sponsoring the 6th International Symposium on Hypothalamic Hamartomas – a professional symposium for HH investigators, clinicians, and researchers in Barcelona, Spain, September 4-5. Over the years, we have come to appreciate the incredible power of these meetings, which allows us to facilitate the bringing together of an international group of experts with the mission to increase collaboration, a greater understanding of the comorbidities experienced by patients in all areas of their lives, and a greater ability to drive science forward.
These meetings have inspired important global multi-institutional research initiatives and publications, including such critical topics as Surgical Comparative Effectiveness in HH, multiple HH Animal Model studies, Neural Network Mapping for HH and Gelastic seizures, as well as clinical trials on the use of focused ultrasound on HH. We are confident that this year’s Symposium will continue this legacy of putting the patients first and driving science to improve Quality of Life over the entire Lifespan!
Hope for HH seeks to be the voice of our community of patients and caregivers. The spectrum of comorbidities – including cognitive, physical, emotional, and intellectual abilities ranges from severely impaired to minimally impaired and everything in between. However, despite the many advances in science in recent years, the diagnostic odyssey is still extremely complicated and takes way too long for many. Comorbidities still go undiagnosed or worse – patients and caregivers are told the symptoms have nothing to do with the HH. Also, surgical options are still often based solely on what a center provides rather than what might be “optimal” for the patient. It is critical that we come together and implement internationally agreed upon best practices in HH diagnosis, treatment, and long-term management of the condition. Families and patients want to be heard and to feel they are a critical part of the decision-making team that is responsible for their care!
This is the 6th Symposium on HH Syndrome with prior symposiums in Montreal, Canada (2001); Marseille, France (2013); London, United Kingdom (2016), Washington DC, USA (2019), Calgary, Canada (2022), and now in Barcelona, Spain.
These professional-focused events provide a unique opportunity for the attendees to interact with, learn from, and even challenge their colleagues. New collaborations, partnerships, and research initiatives are the powerful outcomes of these meetings.
As we finalize the plans for this symposium in September, we want the HH patient and caregiver community to understand not only the significance of these past meetings but how YOU can make a very real impact.
We welcome your questions and input as we prepare for this important meeting.
AGENDA
- Background to HH Therapies – Patient Testimony and Scientific Talks
- Background to HH Therapies and Live QR Code Audience Survey
- The Journey of a Child with HH Through Treatment and Therapy
- Genetic Architecture of HH: Identifying New Molecular Therapeutic Targets
- New Insights into the Physiology of the Epileptogenesis in HH Reveal Potential Pharmacologic Targets
- Development of Preclinical Mouse Models of HH
- The Challenge of Gene and Drug Therapy Protocols for HH
- New Targeted Therapies for HH: Convection-enhanced Delivery to Infuse a Genetic Silencer or Anti-epileptic Agent
- Gap Analysis and future Research Directions
- Genetics, Comorbidities, and Phenotypes Working Groups
- The Challenge of Hypothalamic Rages
- The Challenge of Comorbidities
- Results of Patient and Caregiver Survey on Rage Behaviors
- Initiation of Rage Behaviors in the Rodent Model
- Brain Connectivity Changes and Dysregulation of Emotion-Regulation Networks in Epilepsy
- History and Lessons Learned from Psychological Surgery in Aggression
- Hypothalamic Hamartomas Clinical Recommendation
- Review and Working Group
- Comparative Effectiveness of Surgical Treatments Used in HH: A Systematic Review
- A Comprehensive Review
- Direct Surgery: Lessons from our Practice
- Gamma Knife: Lessons from our Practice
- LASER options: Lessons from our Practice
- Focus Ultrasound: Lessons from our Practice
- Thermocoagulation: Lessons from our Practice
- Development of an HH Research Roadmap
