Hope for Hypothalamic Hamartomas

We focus our efforts and funding on early detection, improved treatments, and managing HH as a complex medical syndrome with the goal of one day finding a cure.

For Researchers

With continuing research on hypothalamic hamartomas, researchers are gaining a better understanding of the condition and its complex comorbidities.

For Professionals

Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.

For Donors

Contributions are a critical part of our efforts to provide support to patients and families, as well as to educate medical professionals and therapists.

Meet Other Families

Our Programs

Hope for Hypothalamic Hamartomas offers helpful programs to help patients navigate through their journey from initial diagnosis to further treatment and more.

Patient Conferences

  • Providing HH patients and families to connect with one another face to face.
  • Multi-day events providing information and education through guest speakers.
  • Over the past 14 years, Hope For HH has hosted 5 Patient Conferences and continues to host these events every 2 – 3 years.

Research Grants

  • Hope For HH continues to fund grants supporting researchers.
  • Current grants include:
    • Developing a Mouse Model of HH
  • Past grants include:
    • Genomic Profiling
    • Resting state functional Magnetic Resonance Imaging (fMRI).

Patient Support

  • Dedicated volunteers providing individual support to patients and families.
  • Host virtual Meet and Greet sessions to provide a casual and friendly opportunity for our international Hope For HH Community to connect face-to-face.
  • Downloadable education tools and resources for patients, caregivers, and healthcare providers.
  • Provided 80 Patients with Surgical Support since 2017.

Professional HH Symposiums

  • Over the past 14 years, Hope For HH has hosted 5 International Hypothalamic Hamartoma Professional Symposium with the latest in 2022 (Calgary, Canada).
  • These events gather the foremost experts in hypothalamic hamartomas to increase understanding of HH, disseminate best practices, and identify new research opportunities.
  • Hope For HH provides grants to young investigators to attend these events to foster those with pursuing a professional focus on HH.

Cofounders, Erica Webster and Lisa Soeby, discuss the role of the Hope for Hypothalamic Hamartomas organization for advancing education, support and research on behalf of all living with this rare and complex syndrome.

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