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.

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.

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.

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.

“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.”

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.

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.