The NIH Undiagnosed Disease Network
National Jewish Health - (from website) "National Jewish Health is the only facility in the world dedicated exclusively to groundbreaking medical research and treatment of patients with respiratory, cardiac, immune and related disorders."
MAPS = Medical Academy of Pediatric Special Needs
MAPS Doctors tend to be the most educated about medical issues in people with autism and related disorders such as ADHD, Sensory Processing Disorder, etc. This is a directory of doctors and other health care practitioners who have attended MAPS training conferences (this list is not an endorsement or recommendation, so you should check them out before working with any).
This page on the ARI (Autism Research Institute) website has suggestions for how to select a provider for your child.
Richard Frye, MD. is a pediatric neurologist and Director of Autism Research at Arkansas Children's Hospital Research Institute.
Dan Rossignol, MD FAAFP from his website "Dr. Rossignol has a special interest in autism spectrum disorders, PANS/PANDAS, cerebral palsy, and related neurological and developmental disorders as well as medically complex children and adults."
Dr. Nancy Klimas - is chair of clinical immunology at Nova Southeastern University and director of
The Institute for Neuro Immune Medicine. This is a brief video of Dr Klimas talking about The Institute for Neuro-Immune Disorders, including the basic philosophy, types of research they are currently engaged in, and potential future research topics.
Nevada Center for Biomedical Research focuses on research into neuro-immune disorders including ME/CFS, autism, and fibromyalgia and the underlying immunological, inflammatory, mitochondrial
and other factors.
Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative - they are leading the way in studying the role that immunological and infectious factors play in chronic diseases such as ME/CFS.
Steven Jacobson, Ph.D. - is a senior investigator at the National Institute of Neurological Disorders and Stroke with a specialty in viral immunology and neurovirology, with a focus on herpes viruses and their role in progressive neurological disease.
Paul Cheney, M.D. - is medical director of The Cheney Clinic in North Carolina and a leading doctor in the treatment of ME/CFS, in particular immune system involvement and cardiac involvement.
Mark Korson, MD - is a leading metabolic and mitochondrial specialist. More about him here.
Richard Boles, MD - "Dr. Boles practices the “bedside to bench to bedside” model of a physician-scientist, combining a very active clinical practice in metabolic and mitochondrial disorders with basic research as director of a mitochondrial genetics laboratory at the Saban Research Institute. Dr. Boles’ clinical and research focus is on polymorphisms (common genetic changes) in the maternally-inherited mitochondrial DNA, and their effects on the development of common functional disorders."
Robert K. Naviaux, MD, PhD - is an expert in mito and metabolic disorders and how they relate to the cellular danger response, and neurological disorders including CFS, autism, PTSD, Parkinson's, and more.
Michio Hirano, MD - is a neurologist who specializes in mitochondrial disease. From his bio-
"Dr. Hirano's research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC)."
The Foundation for Mitochondrial Medicine Program at UAB - this is a new multidisciplinary center with the mission of developing new techniques for diagnosis and treatment of mito disorders.
Philip Miner, MD - G.I. doctor with an expertise in mast cell disorders and how they affect the digestive system.
Ikuo Hirano, MD - is a G.I. who specializes in EGIDs and seems well respected by his patients.
Mast Cell Disease, Eosinophilic Diseases, and Other Allergic Diseases:
J. Pablo Abonia, MD. - specialist in eosinophilic and mast cell disorders and immunodeficiency at Cincinnati Children's Hospital (sees adults too).
Lawrence Afrin, MD. - Leading doctor in US for Mast Cell Activation Syndrome.
Anne Maitland, M.D. - expertise in both Mast cell disease and it's connection to EDS/connective tissue disease.
Cincinnati Center for Eosinophilic Disorders - International leaders in researching and treating eosinophilic disorders including EGIDs.
The Mastocytosis Center at Brigham and Women's is probably the best place to go if you have Systemic Mastocytosis.
Madeleine W Cunningham, PhD -
M. Elizabeth Latimer, MD - practices child and adolescent neurology, is very knowledgeable about PANDAS.
Jory Goodman, MD is a psychiatrist who works with adults located in Beverly Hills - Refers to Dr. Richard Harris for immunology. From his bio on his site "A national authority in Psychiatry, Neuropsychiatry and Psychopharmacology, Dr. Goodman did the seminal research in the identification and treatment of Fibromyalgia. He is also a nationally recognized expert on A.D.H.D., Sleep Disorders and a multiplicity of Psychiatric, Neurologic and Neurosomatic disorders. His most recent research has focused on P.A.N.D.A.S."
EDS/Connective Tissue Disease/Rheumatology
Clair A Francomano, M.D.- molecular geneticist with expertise in Ehlers-Danlos Syndrome and other connective tissue disorders.
Paolo A. Bolognese, M.D. - one of only a few doctors in the US with expertise in atypical chiari presentations, cervical instability, and other neurological manifestations of EDS.
The Medical Genetics division of the University of Washington Department of Medicine has several doctors who specialize in inherited connective tissue diseases.
Petra Klinge, MD, Ph.D - neurosurgeon with expertise in hydrocephalus, disorders of cerebrospinal fluid such as Spina Bifida, also with a focus on the most rare and complex disorders of the spine and nervous system.
Dr. Schoffeild, MD - she is apparently quite versed in EDS, as well as autoimmune disorders (rec'ed by a pharmacist at LMP hospital). This entire clinic sounds very promising.
P. Ashley Wackym MD - is an ENT/Otolaryngologist who specializes in finding and repairing tiny holes in the inner ear that can cause vestibular disorders, dysautonomia, and other problems that he can often correct with surgery.
The Stanford Center for Narcolepsy. They are world leaders in researching, understanding, and treating narcolepsy.
Carol Duffy, M.D. - is a professor of microbiology with a focus on herpes viruses and herpes infections (including encephalitis) in humans.
Eric Lowell Singman, M.D., Ph.D. - is a professor of ophthalmology with expertise in neuro-ophthalmology, EDS, and the effects of traumatic brain injury on vision.
Alternative Modalities (non MDs)
Eve Prang Plews LNC, IFMCP has been highly recommended to me by other EGID patients. She is trained in functional medicine, homeopathy, and nutrition.