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When a blackout threatens to cancel the holidays, a group of resilient kids with rare diseases hatch an outrageous plan to save the day.

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A global leader in rare disease care, The New York Center for Rare Diseases at Montefiore Einstein is at the forefront of innovation and groundbreaking research and is an international referral site for the most complex, rare and inherited conditions.

Starting rocket

We are a designated Center of Excellence by the National Organization for Rare Disorders (NORD)—one of only 40 academic medical centers in the U.S. selected to be a part of this prestigious national network.

Discovery
Awaits

Come on an odyssey to learn more about rare diseases.

Meet the Heroes

The heroes of our film are a band of resilient kids who live with rare diseases but are not defined by them. Each one, in their own words, tells us about their rare disease.

  • Image of Emmelina [Gauge]

    “My condition is called Ehlers-Danlos syndrome, or EDS for short. Other kids’ bones are as strong as metal, but mine are more like a feather. One dangerous move and my arm dislocates.”

    Emmelina [Gauge]

    Diagnosed with Ehlers-Danlos syndrome

  • Image of Benjamin [Mad Hatter]

    “So I have a form of dwarfism. It's a condition where your joints and legs do not grow as fast, making you shorter than most people. I can't really explain the name because it's way too complicated. But an abbreviation for it is SED.”

    Benjamin [Mad Hatter]

    Diagnosed with Spondyloepiphyseal Dysplasia Congenita (SED)

  • Image of Zia [Books]

    “My rare condition is called piebaldism, and it makes my skin have a really cool pattern to it. It's like the skin cells are given two different colors.”

    Zia [Books]

    Diagnosed with Piebaldism

  • Image of Jeffrey [Moose]

    “My disease is called AMPS—Amplified Musculoskeletal Pain syndrome. It basically makes me hurt more. And when I'm stressed or sick, it grows.”

    Jeffrey [Moose]

    Diagnosed with Amplified Musculoskeletal Pain syndrome (AMPS) and Functional Neurologic Deficits (FND)

  • Image of Phebe [Sticks]

    “I have the rare disease called achondroplasia, which is a type of dwarfism. It's just like you are shorter than average, but you're kind of unique, so you're above average.”

    Phebe [Sticks]

    Diagnosed with Achondroplasia

"Each rare disease journey is completely unique, always aiming to arrive at a place where we can diagnose, care, and, we hope, cure."

John M. Greally, DMed, PhD FACMG

Executive Director, New York Center for Rare Diseases at Montefiore Einstein

Boldly Going Where Few Have Gone Before

The New York Center for Rare Diseases at Montefiore Einstein is recognized for our world-renowned doctors, groundbreaking research and clinical excellence in caring for people with rare conditions. We offer access to the latest and most advanced diagnostics and treatments to help predict, prevent, detect and treat rare conditions earlier.

Our multidisciplinary team approach is designed to help patients and their families get from uncertainty to an accurate diagnosis as quickly as possible, building a personalized treatment plan around each individual’s needs. Our numerous clinical trials give our patients access to emerging technologies, innovative treatments and cures that are otherwise unavailable.

Discover More About Rare Diseases