Founded in 2009
Hope for HH seeks to provide information and support to hypothalamic hamartoma patients, caregivers, and healthcare providers and to promote research toward early detection, improved treatments, living with HH, and cure.
Hope for Hypothalamic Hamartomas, (Hope for HH) a 501c3 non profit organization that provides information and support to newly diagnosed patients and their caregivers and promotes research toward the prevention, treatment and cure of this condition.
Hope for Hypothalamic Hamartomas (Hope for HH) is a volunteer-based nonprofit organization founded by parents of children with hypothalamic hamartomas (HH). Ou...r goal is to create a single, credible source for information about the diagnosis, treatment, and support of individuals with HH. Every family touched by this rare disorder has a unique and often heart-breaking story of how they attained a correct diagnosis.
Hope for Hypothalamic Hamartomas’ Board of Directors is comprised of 4 extraordinary women who are parents of children with HH ranging in age from 6 - 16. Among... us we have unique talents which include a business administrator and patient advocate; a lawyer and non-profit executive; a business analyst and web designer; and a student counselor and educational advocate. We have leveraged our collective expertise to found Hope For HH and have donated countless hours and dollars to bring Hope for HH from idea to fruition. In order to achieve our mission, we’ll continue to build our team of dedicated volunteers who will donate their talent, resources, and time to the success of Hope For HH.