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Kids Health Matters
Tag: rare disease

Home / Kids Health Matters / rare disease
My Gillette Story

Ethan Glides, With a Little Help from His Friends

Ethan Johnson was diagnosed with a rare condition as an infant. His parents were told he may never walk without assistance. Now seven years old, not only does he walk, he flies out on the ice. Read Ethan's story here.
February 26, 2021
Neurology and Neurosurgery

“We’re Kind of Like Sherlock Holmes.” Two Gillette Neurologists Share a Passion for Helping Patients Who Have a Rare Disease

Figuring out if your child has a rare disease is a concerning and challenging puzzle for parents.Two members of the Gillette team, pediatric neurologists Randal Richardson, MD, and Jamie Eskuri, MD, say finding answers and guiding families through a rare disease diagnosis and care plan is one of the most rewarding parts of their jobs.
February 24, 2021
Rare Conditions

Caring for Rare Diseases and Solving Puzzles: Meet Arthur Beisang, MD

Gillette Children's Specialty Healthcare is known worldwide for its expertise in caring for children diagnosed with rare diseases. Gillette complex care pediatrician, Arthur Beisang, MD is part of the team devoted to providing excellent care and improving the lives of children living with a rare disease.
February 22, 2021

New Rare Disease Survey Seeks to Improve Access and Care

A new survey hopes to provide a better understanding of the challenges to health care access for Minnesota families as they care for a child who has a rare disease. One in ten Minnesotans are living with a rare disease. Gillette Children's Specialty Healthcare is known worldwide for its expert level of care for children who have rare diseases and is encouraging participation in the Rare Disease Healthcare Access Study.
February 4, 2021
Disability Advocacy

Puppies with Purpose: The Benefits of Animal-Assisted Therapy

“It’s just so wonderful to watch these children get better. It’s also very rewarding to see the connection that forms between the children and my dogs. They become friends.”
February 24, 2020
Rare Conditions
Robert Favorite as a young child on a bike

Robert’s Life with Prader-Willi Syndrome: A Rare Disease Story

For Janet Favorite, navigating her son Robert’s rare condition has been a rollercoaster, steadied by her family’s commitment to providing him with expert care and access to resources at Gillette Children’s Specialty Healthcare. Read her story.
February 27, 2019
Rare Conditions
Gillette patient Michael with his mom

What is a Rare Disease? A Closer Look

Rare Disease Day is Feb. 28, 2019. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people.
February 25, 2019
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    • “We’re Kind of Like Sherlock Holmes.” Two Gillette Neurologists Share a Passion for Helping Patients Who Have a Rare Disease
    • Caring for Rare Diseases and Solving Puzzles: Meet Arthur Beisang, MD
    • ENT Issues Have a Profound Impact on a Child’s Health and Happiness: Meet Micah Berman, MD
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