Hope for HH participates in key epilepsy wide initiatives including the Rare Epilepsy Network (REN) – a network of 29 rare conditions that all share seizures as a common side effect. The REN is collecting patient data about these conditions and leading critical research toward improving side effect management and care.
We know there are at least 300 patients in the US with hypothalamic hamartomas (HH) and more internationally. Yet only 85 HH patients/caregivers have signed up to join the REN study.
Please help us get every person diagnosed with HH into the REN so we can expedite research into HH to better understand what causes it, improve treatments and improve the lives and quality of care for our community.
Read the February REN newsletter here.
Sign up to join the register here.