The Hope for Hypothalamic Hamartomas Contact Registry is used to inform individuals with HH and caregivers about:

  • Opportunities to participate in research
  • Opportunities to contribute data
  • Discoveries about hypothalamic hamartomas that may impact care decisions
  • Hope For HH funded research grants
  • Hope For HH hosted patient and caregiver events
  • Fundraising initiatives and opportunities

Registrants’ contact information will not be shared with anyone outside of the Hope For HH organization. Registrants will be provided with contact information about relevant research, survey efforts and fundraising. These initiatives will include our own internal projects, as well as the projects of outside researchers.

Should we need to change or amend our policy regarding acceptable use of our contact registry, you will be notified.