A Hypothalamic Hamartoma Journey of Discovery The Beginning of Knowledge – Finding the Hypothalamic Hamartoma I entered the world as a work in progress after only 32 weeks. Several personal anatomical anomalies, including extra digits, required correction then and throughout the following years. I reached developmental milestones in my own time but eventually caught…
Hope for Hypothalamic Hamartomas
We promote research into early detection, improved treatments, living with HH as a complex medical syndrome, and a cure.
With continuing research on hypothalamic hamartomas, researchers are gaining a better understanding of the condition and its complex comorbidities.
Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.
Hope for Hypothalamic Hamartomas offers helpful programs to help patients navigate through their journey from initial diagnosis to further treatment and more.
- 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 10 years Hope For HH has hosted 4 Patient Conferences with the next scheduled for October 2021.
- Hope For HH continues to fund grants supporting researchers
- Current grants include:
- Genomic Profiling
- Past grants include:
- Resting state functional Magnetic Resonance Imaging (fMRI)
- Generating a Novel Rat Model of HH
- Provided 80 Patient Surgical Support since 2017.
- Dedicated volunteers providing individual support to patients and families.
- Downloadable education tools and resources for patients, caregivers and healthcare providers
Professional HH Symposiums
- Over the past 10 years Hope For HH has funded 3 HH International symposiums with the next scheduled for 2022 in 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
Dr. William D. Gaillard, Chairman, 4th International Symposium on Hypothalamic Hamartomas, shares a brief overview of the 2 day conference and new opportunities for collaboration and research.
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