General News

In 2021, M Health Fairview Masonic Children's Hospital joined a group of 31 facilities nationwide to be named as a Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD). This designation is used to reflect an institutions focus and commitment to expanding nationwide access to advanced care, treatments, and research for rare disease patients. Patients with rare disease often struggle to find care and M Health Fairview Masonic Children's Hospital utilizes a multidisciplinary and state-of-the-art approach to ensure patients receive the care and attention they deserve. 

Zachary Thomas, a 12-year-old from Alabama, traveled to M Health Fairview Masonic Children's Hospital to receive treatment for Hurler syndrome, a rare disease affecting approximately one in 100,000 people in the United States. This condition results from a deficiency of an enzyme needed to break down certain complex molecules. After diagnosis, Zachary and his family sought care in Minnesota, drawn by the hospital's reputation for rare disease treatment and its interdisciplinary approach to patient care.

In September 2021, Celia Grace Hamlett was the first person in the United States to receive a life saving treatment for Metachromatic Leukodystrophy (MLD), a rare genetic condition that affects approximately 1 in 40,000 children in the United States annually. The treatment was a gene therapy used on Celia after the M Health Fairview Masonic Children's Hospital researchers and physicians worked with the Food and Drug Administration (FDA) to get the treatment approved.