Hope For Hypothalamic Hamartomas

Provides information, support and community to patients, caregivers & healthcare providers living with or treating HH as a complex medical syndrome.

[Hope For Hypothalamic Hamartomas @HopeforHH]

❓Did you know that some rare syndromes may occur with Hypothalamic Hamartoma Syndrome?

These syndromes include:

ℹ️ Central Precocious Puberty (CPP)

ℹ️ Lennox-Gastaut Syndrome (LGS)

ℹ️ Pallister-Hall Syndrome (PHS)

ℹ️ Acquired Prader-Willi Syndrome (PWS)

[Hope For Hypothalamic Hamartomas @HopeforHH]

❓What is the Hypothalamus, and what is the impact of a tumor in this region of the brain?
#HopeForHH #HypothalamicHamartoma #braintumor #gelastic #seizures #obesity #rages #RareDisease #Epilepsy #Seizures

[Hope For Hypothalamic Hamartomas @HopeforHH]

Arrabella is another brave HH warrior. She’s bright, competitive, and ambitious — showing the world that this diagnosis does not define her. 💪💜

📖 Read her inspiring story here 👉 https://t.co/01m4s7PdQT

#HopeInAction #HHWarrior #HypothalamicHamartomaAwareness

[Hope For Hypothalamic Hamartomas @HopeforHH]

🗺️The Patient Journey for those with HH Syndrome often begins before an official diagnosis & extends well beyond the point of having treatment. We understand that this journey is not always linear, but we have built our website to provide resources for each stage of the journey

[Hope For Hypothalamic Hamartomas @HopeforHH]

"It provides a platform for many different specialties from all over the world involved in the care of HH patients to meet up, exchange clinical & research ideas, increased provider/public awareness of HH, & facilitate expert debate & dialogue on how to better manage HH patient."

[Hope For Hypothalamic Hamartomas @HopeforHH]

"By exploring HH as a disorder of brain-wide networks, this symposium fosters discussions that go beyond seizure reduction—focusing on cognitive function, neurodevelopmental outcomes, and lifelong neurological health." #Neuro #rarediseases

[Hope For Hypothalamic Hamartomas @HopeforHH]

Show your support & join with Sam, Maleah, Renato, and Liberty, and be part of our 'What I Wish People Knew' initiative to help educate the public about Hypothalamic Hamartoma (HH) Syndrome.
For more information email [email protected]
#HHAwareness #InternationalHHAwarenessMonth

[Hope For Hypothalamic Hamartomas @HopeforHH]

"It is the perfect opportunity for international leaders in the HH field to get together & discuss the latest advances in HH diagnostics & opportunities for precision therapies including N-of-1 clinical trials of new or re-purposed pharmacologic and gene-based treatments." #Neuro

[Hope For Hypothalamic Hamartomas @HopeforHH]

The Symposium is important because…
"It is the perfect context for exchanging information and identifying needs through in-depth discussions with highly specialised professionals from different disciplines and with patient representatives." #neuro #rarediseases

[Hope For Hypothalamic Hamartomas @HopeforHH]

💡Session Topic 'Comparative Effectiveness of Surgical Treatments Used in HH'

This session will be a systematic review of the various surgical treatment options currently available for HH. This session will include neurosurgeons from Germany, France, Canada, & the United States.

[Hope For Hypothalamic Hamartomas @HopeforHH]

💡Session Topic 'Hypothalamic Hamartomas Clinical Recommendations'
The objective of this session is to gather feedback from the international clinicians and researchers and to finalize the Clinical Recommendations for Hypothalamic Hamartoma Syndrome for publication.

[Hope For Hypothalamic Hamartomas @HopeforHH]

💡'Gap Analysis and Future Research Directions'

This session will consist of three working groups, each with a unique objective to analyze current known gaps in genetics, comorbidities, and phenotyping and develop a draft roadmap of future research needs and opportunities.

[Hope For Hypothalamic Hamartomas @HopeforHH]

Hope for Hypothalamic Hamartomas is proud to announce that today is the start of International Hypothalamic Hamartoma (HH) Awareness Month. #HHAwareness
👉https://t.co/MVnfgBW9cd

#InternationalHHAwareness #RareDisease #Epilepsy #Seizures

[Hope For Hypothalamic Hamartomas @HopeforHH]

"River’s Hypothalamic Hamartoma was discovered at 10 months old when he had his first MRI. When we received the news from his Neurologist in New Orleans we immediately went home and started researching. We discovered Hope for HH and it changed our world."
https://t.co/n7s0ynJrJL

[Hope For Hypothalamic Hamartomas @HopeforHH]

"Warrior Wyatt & other patients like him need support, research & future treatment options! Hope for HH works hard to advance progress for these needs, but that can't continue without the support of the community." https://t.co/n7s0ynJZzj

[Hope For Hypothalamic Hamartomas @HopeforHH]

We have lots of exciting plans for September with 2025 International HH Awareness Month. Make sure you check out our latest newsletter and find out ways you can participate. 👉 https://t.co/yMSW3ErfQy
#HHawareness #InternationalHHAwareness

[Hope For Hypothalamic Hamartomas @HopeforHH]

September 1st kicks off International Hypothalamic Hamartoma (HH) Awareness Month. Are you READY to support the community and help raise money for our 👉2026 Patient Conference (more info to follow)?

[Hope For Hypothalamic Hamartomas @HopeforHH]

Session Topic 'Comparative Effectiveness of Surgical Treatments Used in HH'
📷Session Chair(s) and Speaker Spotlight
Dr. Shirozu, Dr Rumia, and Dr. San Antonio will chair this session on a systematic review of the various surgical treatment options currently available for HH.

[Hope For Hypothalamic Hamartomas @HopeforHH]

Session Topic 'Hypothalamic Hamartomas Clinical Recommendations'
📷Session Chair(s) and Speaker Spotlight
Dr. Alexis Arzimanoglou and Dr. Rocamora will chair this session as we review the newly drafted Clinical Recommendations for Hypothalamic Hamartoma Syndrome.

[Hope For Hypothalamic Hamartomas @HopeforHH]

Phenotyping - 'Gap Analysis and Future Research Directions' - To analyze current gaps in genetics, comorbidities, and phenotyping, and develop a draft roadmap of future research needs and opportunities.
💡Leads: Helen Cross, MD & Daniel Curry, MD