Launched New Content | Treatment Facilities

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Treatment Facilities

 

Launched New Content | Treatment Facilities

Hope for HH has recently updated our treatment facilities page here for the United States. HH (hypothalamic hamartoma) is a rare brain tumor and is best treated at an epilepsy specialty center. For patients newly diagnosed with HH or those living with and managing this condition, we encourage you to seek out an experienced neurology team who can individualize treatments and is affiliated with a hospital that offers multi-disciplinary coordinated care to see you through evaluations, surgery, post-surgery care, and long-term management. 

It is critical to understand that multiple types of surgeries have been developed for patients diagnosed with HH and others are currently being investigated. However, not all treatments are available at all centers and some centers may develop a particular expertise in one treatment while others offer multiple treatments. 

The list compiled on the HH website followed a 2017 survey of hospitals and meet 5 key criteria including: NAEC level 4 status, dedicated coordinator, treatment of at least 6 HH patients, availability of multi-disciplinary care, and provider consultations and/or 2nd opinions. 

When researching and selecting a hospital, we urge you to ask:

  1. Are they are full service, NAEC level 4 center? 
  2. How many HH patients have they treated? And how recently?
  3. What treatments and services are available?
  4. Whether multidisciplinary treatment and post-treatment management is available? 

Our treatment page also includes resources for finding a doctor and finding an epilepsy center

Stay tuned for more information on international facilities.

Hope for HH does not endorse any hospitals or doctors, nor do we represent that our list is complete. The site, content and links are for information purposes only. 

Please contact Hope for HH at info@hopeforhh.org if your hospital meets the criteria above and you would like to be listed on the website.