Hope for HH has formed strategic partnerships with leaders in epilepsy including government agencies, professional societies, and disease-based advocacy organizations.

Through these partnerships, Hope for HH seeks to ensure our patients have access to cutting edge information and support, to educate health professionals about HH and to ensure expeditious and correct diagnosis. We also hope to encourage young researchers to commit themselves to the study of HH and finally, to secure a place for HH treatment in national health policy discussions and funding decisions.


Hope for Hypothalamic Hamartomas UK

Raising awareness of hypothalamic hamartoma and supporting families who have been affected by the condition in the United Kingdom.

American Epilepsy Society

The American Epilepsy Society promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy.

Child Neurology Foundation

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of disease diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures.


Citizens United for Research in Epilepsy (CURE) is a nonprofit organization dedicated to finding a cure for the epilepsies by funding research and by increasing awareness of the prevalence and devastation of this disease.

DEE-P Connections

Sharing Critical Resources for Families Who Struggle with Developmental & Epileptic Encephalopathies.

EpiCARE: a European Reference Network for rare and complex epilepsies

European Reference Network for rare and complex epilepsies. The epilepsies are a group of disorders where individuals are prone to recurrent epileptic seizures. EpiCARE brings together highly specialized health centers (28 full members and 15 affiliated partners) in 24 European countries with expertise in rare and complex epilepsies.

Epilepsy Foundation

The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies.

Epilepsy Leadership Council

The Epilepsy Leadership Council is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas where working together produces greater efficiency and impact than working independently.

EURORDIS – The Voice of Rare Disease Patients in Europe

EURORDIS is a non-governmental patient-driven alliance of patient organizations representing 869 rare disease patient organizations in 71 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.


Interagency Collaborative to Advance Research in Epilepsy Epilepsy research needs reach across the missions of multiple NIH Institutes and Centers and across many organizations outside the NIH. As the primary NIH Institute for epilepsy research, NINDS leads this working group, with broad representation from the NIH, other Federal agencies, and the research and patient advocacy…


The International League Against Epilepsy (ILAE) was founded in 1909 and is an organization of more than 100 national chapters. The goals of the ILAE are: • To advance and disseminate knowledge about epilepsy • To promote research, education and training • To improve services and care for patients, especially by prevention, diagnosis and treatment.

National Association of Epilepsy Centers

With the goal of no seizures and no side effects, the National Association of Epilepsy Centers strives to make high quality healthcare available and affordable for epilepsy patients across the country. NAEC is a non-profit 501c6 trade association with a membership of 190 specialized epilepsy centers in the United States.

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.


The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease. To accomplish this goal the NINDS supports and conducts basic, translational, and clinical research on the normal and diseased nervous system.

Pediatric Brain Surgery Alliance

We enhance the lives of children who need neurosurgery to treat medication-resistant epilepsy by empowering their families with research, support services, and impactful programs across the lifespan.

Rare Epilepsy Network

The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.

Rare Revolution Magazine

The mission of Rare Revolution is to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. It’s time to turn the tide!