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Launched New Content | News, Research & Resources

  News, Research & Resources recently launched new content on the! If you...Read More >

A Sister’s Story

A Sister's Story by Annie Kane My name is Annie Kane, I’m 14 and I have two crazy siblings: my brot...Read More >

Meet Mason

Mason's Story It was a Tuesday, September 22nd 2015.  Mason was about 19 months old and we had ru...Read More >

Endocrine Dysfunction – What does it mean?

  Endocrine Dysfunction For most patients and families – the thought of HH surgery brings u...Read More >

Ketogenic Diet and HH

Many families with HH and other refractory (difficult to treat) seizures search for options other ...Read More >

Listen as Dr. Helen Cross describes findings from a recent study regarding cognitive and behavioral challenges in patients with HH.

Newly Diagnosed

Getting a new diagnosis can be frightening and overwhelming. There is a whole new vocabulary you have never heard before, and not understanding it can mean confusion and further isolation. Start here to learn the basics and make informed decisions.


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For Professionals

Correctly diagnosing a hypothalamic hamartoma (HH) can be challenging for even the most experienced professional. Start here to gain a better understanding of the comorbidities associated with a hypothalamic hamartoma and the appropriate diagnostic tools available to providers today.


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For Donors

Your contributions are a critical part of our efforts to provide support to patients and families, educate medical professionals and therapists, and to encourage researchers to seek answers to this very complex condition. Start here to read more and support our on-going efforts.

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1 in 200k diagnosed worldwide

Often goes undiagnosed or misdiagnosed for years

Seizures commonly unresponsive to medication

Can result in cognitive and behavioral deterioration, learning disabilities, endocrine dysfunction and sleep disturbances

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasMonday, February 26th, 2018 at 5:19am

#ShowYourRare Are you ready to show your support of Hypothalamic Hamartomas and other rare diseases on February 28th! Make sure your FaceBook profile is updated using this link:

Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, February 24th, 2018 at 4:56am

Meet Lucy Ronson Allalouf an incredible young lady with a heart of gold. Oh, and she also has an HH. But Lucy is focusing not on her own challenges but instead on what she can do for others! Her art is incredible and her story...

Hope for Hypothalamic Hamartomas
The Jewish News
Meet Young Hero #3: Eleven-year-old Lucy Ronson Allalouf has inspired many through her perseverance in the face of adversity. She was born with a rare brain tumour and survived her first brain surgery aged just 14 months. Notwithstanding these difficulties, Lucy paints canvases for Camp Simcha UK and sings with the choir at Rays of Sunshine Children's Charity – making a difference to those around her. #NightOfHeroes Read more about Lucy's story here:
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasSaturday, February 24th, 2018 at 3:45am

For all the strong amazing women who walk this HH journey with us. Thank you for your strength and determination. #strength #beauty #mom #wife #sister #aunt #grandmother #bff


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