M Health Fairview Masonic Children’s Hospital

Rare Diseases at M Health Fairview Masonic Children’s Hospital

Serves children and adults

Adult Neuromuscular Services

Multidisciplinary clinic encompasses all needs for adults affected by muscular dystrophies, congenital and metabolic myopathies, Charcot-Marie-Tooth disease and related disorders, Friedreich’s ataxia, myasthenia gravis and myasthenic syndromes.
Serves adults
Contacts: Emily Guion and Pamela Sandin

ALS Clinic

The University of Minnesota ALS Association Certified Treatment Center of Excellence provides comprehensive care for people living with ALS and has the ALS Association’s highest level of certification.
Serves adults
Contacts: Pamela Sandin

Center for Pediatric Cancer & Cancer Predisposition

Minnesota’s top institution for pediatric cancer care and the only site in the state providing specialized treatment for neurofibromatosis, retinoblastoma, thyroid cancers, and neuroblastoma.
Serves children and adults.
Contact: Katie Hageboeck Children's Cancer Research Fund Clinic

Charcot-Marie-Tooth Clinic

The University of Minnesota CMT Center of Excellence is one of the few multidisciplinary CMT clinics in the nation. We have Center of Excellence status from the Muscular Dystrophy Association, CMT Association, and Hereditary Neuropathy Foundation. Our clinic features a board-certified Neuromuscular Medicine neurologist as well as two nurses, a physical therapist, occupational therapist, genetic counselor, social worker, and research coordinator. We have extensive experience treating people living with CMT and in national and participate in international CMT clinical research programs.
Serves adults
Contact: Melissa Diaz and Makayla Nelson

Comprehensive Adrenoleukodystrohpy (ALD) Clinic

Serves children and adults
Contact: Nicole Beck

Congenital Adrenal Hyperplasia Program

Serves children and adults
Contact: Amy Drilling (PH: 612.365.6132); Natalie Schmitz (PH: 612.273.0886)

Epidermolysis Bullosa (EB) Center

Serves children and adults
Contact: Gretchen Lilja (Hematology, Cellular Therapies), Cynthia Clark (Dermatology)
Email: [email protected] (Hematology, Cellular Therapies)

Fanconi Anemia (FA) Comprehensive Care Center

Serves children and adults
Contact: Mandi Bombard
Email: [email protected]
Website under development

Fragile X Clinic

Serves children and adults
Contact: Desirae Rambeck

Hemoglobinopathy Cellular Therapy Program

Serves children and adults
Contact: Erica Johnson (Pediatric), BMT Intake Specialist Coordinators (Adult)
Emails: [email protected] (Pediatrics); [email protected] (Adults)
Websites under development

Mucopolysaccharidosis (MPS) Center

Serves children
Contact: Nicole Beck

Neurodevlopmental Program in Rare Disease (NPRD)

Serves children
Contact: Kristin McCann or Kashia Vang

Pediatric Bone Health Program

Serves children
Contact: Amy Drilling (PH: 612.365.6132); Natalie Schmitz (PH: 612.273.0886)
Website link: under development

Pediatric Neuro-Oncology and Neurocutaneous Disorder Center

Serves children and adults
Contact: Gretchan Skog (oncology) or Amy Hanson (neurocutaneous)
Website under development

Pediatric Neuromuscular Services

Multidisciplinary clinic encompasses all needs for children affected by muscular dystrophies, congenital and metabolic myopathies, Charcot-Marie-Tooth disease, and related disorders, Friedreich’s ataxia, myasthenia gravis and myasthenic syndromes.
Serves children
Contact Kelly Sichmeller and Jayne Earhart

Referral Center for Lipid Disorders

Including rare disorders such as homozygous familial hypercholesterolemia, lipoprotein lipase (LPL) deficiency and sitosterolemia
Serves children
Contact: Kari Murdy, Lipid Clinic Coordinator

Telomere Biology Disorder (TBD) Tier 1 Center of Excellence

Includes a team of hematologists, hematopoietic cell transplant physicians, and genetic counselors across pediatric and adult disciplines to care for patients with TBD, from presentation through diagnosis and treatment.
Serves children and adults
Contact: Gretchen Lilja
Website under development
Email: [email protected]

Total Pancreatectomy - Islet Autotransplant Program

Serves children and adults
Contact: Marie Cook