In the News

COVID-19 and Rare Disease: One Family’s experience

Having a rare condition like a hypothalamic hamartoma can be very scary. In today’s world, with...Read More >

Jojo’s Great Life

We are thrilled to be sharing the story of an incredible young man today! His name is Jojo Cana...Read More >

Welcome Volunteer Whitney Barnett To Our Team!

I’m a full-time nurse, wife, and a mother of two children...Reece who’s 10 and Nora, who’s 7. R...Read More >

Sleep Awareness Week

Sleep – it seems like we can never get enough of it! We invest in Fitbits and Apple Watches to ...Read More >

Rare Diseases and Employment Challenges

We are excited to bring you another in our series of blogs by our Intern Afsoon Movahed. Afsoon...Read More >

For Families

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 HamartomasTuesday, April 7th, 2020 at 3:04pm
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic HamartomasMonday, April 6th, 2020 at 4:05pm

A few days ago we had the pleasure to talk with the Jojo Canariato and his family. Jojo is 10 years old and such an inspiration. We hope you take a few minutes to read his guest blog post. Thanks Jojo for reminding us all...

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