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gillette STORIES Tag: rare disease

Home / Kids Health Matters / Tag: rare disease
Innovation and Research
February 20, 2023

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

Gillette Children's 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.
Rare Conditions
February 10, 2023

Dr. Feyma’s Quest to Answer Big Questions

Gillette pediatric neurologist, Tim Feyma, MD, has always been interested in trying to solve life’s biggest questions. Currently he's working to answer some of the most complex questions in rare disease care. He wants to help the patients in his care live a life as free as possible from pain and excess medical interventions.
Rare Conditions
February 7, 2023

Bringing Back Annika’s Smile

The Hendricksen family travels from Wisconsin to Gillette Children's so Annika can receive care for Spinal Muscular Atrophy (SMA) from pediatric neurologist, Randal Richardson, MD. Richardson is a leader in SMA research and provides treatment and hope to Annika's family.
Rare Conditions
February 6, 2023

Rare Disease Breakthroughs in Treatments, Medications, and Therapies

Gillette Children’s is leading the way for new treatments, medications, and therapies to help improve the lives of children diagnosed with rare diseases. “Rare diseases are actually common at Gillette and we’re exploring exciting new treatments and therapies to really revolutionize rare disease care,” says Gillette complex care pediatrician, Arthur Beisang, MD.
Community
September 2, 2022

Celebrating Community: Meet Gillette’s 2022 Walk & Roll Ambassador

Join Juan Diego and his team for Gillette Children's 2022 Walk & Roll community and fundraising event on September 24!
Movement
August 3, 2022

What Are The Signs of Ehlers-Danlos Syndrome in Children?

What is Ehlers-Danlos Syndrome (EDS)? It refers to a group of disorders that affect the body’s connective tissue. This includes the skin, ligaments, tendons and blood vessel walls. The point of these connective tissues is to provide strength and elasticity to other parts of the body. Children with EDS usually have overly flexible joints. They also can have fragile, stretchy skin.
Innovation and Research
June 7, 2022

Why Gillette Children’s Research is so Critical

Gillette Children’s conducts clinical research every day to answer some of the most important questions for patients and families. We focus on improving treatments and making life better for children with medical conditions or disabilities.
Rare Conditions
February 28, 2022

Researching Rare Diseases at Gillette Children’s

Gillette Children's is known worldwide for its research and expertise in caring for children diagnosed with rare diseases such as spinal muscular atrophy (SMA), acute flaccid myelitis (AFM), Legg-Calve Perthes disease, Prader-Willi syndrome, Rett syndrome, and other conditions.
Innovation and Research
February 24, 2022

Rare Disease Awareness and Care

Gillette Children's is known worldwide for its expertise in caring for children diagnosed with rare diseases. Several Gillette providers are participating in an event at the University of Minnesota to talk about the successes and challenges in caring for rare disease disorders. Linda Krach, MD, is a Gillette rehabilitation medicine physician and a keynote speaker at the U of M event. Krach recently won a prestigious award for her work and is part of a team helping patients who have spina bifida and other rare diseases.
Bones
Gillette patient Michael with his mom
February 22, 2022

What is a Rare Disease? A Closer Look

Rare Disease Day is Feb. 28. The main objective of the day is to raise awareness about how rare diseases have an impact on people’s lives and our communities. Gillette Children's is known worldwide for its expertise in caring for children diagnosed with rare diseases such as Rett syndrome, spinal muscular atrophy (SMA), acute flaccid myelitis (AFM), Legg-Calve Perthes disease, Prader-Willi syndrome and other conditions.
June 22, 2021

Gillette Celebrates Speak Now for Kids Family Advocacy Week

Last week, Gillette Children’s once more celebrated Speak Now for Kids Family Advocacy Week! Family Advocacy Week is a campaign designed around elevating public awareness about child health practices, the work of children’s hospitals and policy issues impacting America's children.
Pediatrics
May 6, 2021

Gillette Recognized as Rett Syndrome Center for Excellence

Gillette Children’s is one of 15 institutions across the U.S. being honored with International Rett Syndrome Foundation (IRSF)’s Center of Excellence designation or redesignation
Patient Stories
February 26, 2021

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.
Innovation and Research
February 24, 2021

“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 4, 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 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.
Innovation and Research
February 24, 2020

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.”
Brain
Robert Favorite as a young child on a bike
February 27, 2019

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. Read her story here.
Gillette OI patient, Caleb, in a chef
July 11, 2018

“Chef Caleb” Cooks His Way Through Diagnosis of Osteogenesis Imperfecta

Caleb Pence is decked out in an apron and chef's hat, and he's cooking up a storm for the elderly residents of Breath of Life Adult Day Center in Brainerd, Minnesota. See how Gillette's Baxter Clinic helped solve the mystery of his frequent broken bones, and still supports him today.
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