What is a Gelastic Seizure?

Gelastic seizures are the most specific symptom associated with hypothalamic hamartomas (HH). These are also referred to as laughing seizures although not all individuals with gelastic seizures present with a true laughing sound. They are usually brief, often lasting less than 30 seconds, however they can go longer – sometimes up to a few minutes…

Meet Other Families

Every Story Matters – Sharing your HH story can increase understanding and awareness. The process of sharing this often difficult journey can be healing for both you and others in our community. If you’re interested, please complete this form and we’ll start the process.

Recommended Books

A book can often help you to cope, to learn more about the comorbidities associated with this rare syndrome, to discover other people’s stories and find inspiration in their words. The comorbidities associated with hypothalamic hamartoma syndrome vary from individual to individual. For some management of epilepsy is the overriding concern, others have endocrine or…

Helpful Links

We’ve compiled a list of helpful links to other online resources to help family members and caregivers find additional support.Education CADRE, www.directionservice.org/cadre, the National Center on Dispute Resolution, encourages the use of mediation and other collaborative strategies to resolve disagreements about special education and early intervention programs. Center for Law and Education, www.cleweb.org, strives to make the…

Educational Brochures

Help educate others and raise awareness of Hypothalamic Hamartoma Syndrome! These educational brochures may be downloaded to help you on your own journey of learning more about this rare disorder or share with others on your healthcare team who may not have experience with treating an individual with HH. Patient Journey: Understanding Each Step of…

Doctor FAQs

Hope for HH has created a list of questions to help guide your conversation with your medical provider. These conversations can feel overwhelming and confusing. To maximize the time with your provider, we recommend you identify which questions best apply to your situation and use them as a starting point for the discussion. Being prepared…

Resources

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HH Research Articles

Welcome to our Research Articles. It’s critical as an organization and as those living with hypothalamic hamartomas keep up to date on the most current and pertinent studies that are published on Hypothalamic Hamartoma Syndrome.  Below we’ve included a searchable list of publications covering the following areas which are critical for those living with this…

How You Can Participate in Research

We believe that research is our best hope for advancing diagnosis, treatments and eventually finding a cure for hypothalamic hamartomas. However, research is not just the responsibility of scientists and doctors. It is critical that patients participate in registries and clinical trials to ensure the advancement in understanding of this syndrome. Clinical Trials Clinical trials…