REN Data is Published!
We are thrilled to share the first article titled "Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network" was recently published in The Journal of Pediatrics. 

Thank you to all of the HH patients and caregivers that shared your information to help illuminate how HH impacts the patient and caregiver. 

Huge thanks also to REN leadership team who have devoted countless hours to bring the database and analysis to fruition. Hope for HH is proud to partner with 30 other rare epilepsy advocacy organizations on this critical initiative. Our communities are stronger working together to improve the lives our rare patients. To see an abstract, click here

Thank You HH Patients for Sharing Your Journey


Read the extraordinary journeys of these HH patients.
Want to share your story?  Contact info@hopeforhh.org 

Raising Money & HOPE! 



Thanks to HH patients, families and friends raising funds and 
hope in honor of birthdays, anniversaries and so much more! 
Launch your fundraiser today here  - it's super easy.
Hope for HH @ 
the RARE Patient Advocacy Summitt 

Lisa Soeby attended the RARE Patient Advocacy Summitt. 
 Stay tuned for new ways Hope seeks to support our families. 

2nd Annual Great Strides 5K Raises $18k+
Huge thanks to OrthoBethesda for hosting the 2nd Annual Great Strides 5K raising more than $18000 for Hope for HH. Special thanks to patients Eli and Mark, as well as Dr. William Gaillard  for coming out for the race!

How Will You Raise Epilepsy Awareness this Nov?
Hope for Hypothalamic Hamartomas 

Provides information and support to HH patients, caregivers, and healthcare providers and  promotes research toward early detection, improved treatments, living with HH, and cure.

DO YOU GET IT ALL?