The leukodystrophies are rare – and it seems like the physicians that are knowledgeable on the leukodystrophies are even rarer. The ULF is here to help you find a physician! We have knowledgable Medical and Scientific Advisory Board physicians as well as list of physicians that treat leukodystrophies, and we are actively adding new people with the hopes of identifying at least one specialist in each of the 50 United States. We do have a limited amount of international physicians as well, and it will be a goal to have an additional list including global physicians in the future.

StateNameTitleOrganizationPhone Number
AlabamaRichard Salazar, MDNeurologistThe Jackson Clinic
1801 Pine Street, Suite 202
Montgomery, AL 36016
(334) 293-8082
AlabamaRichard Diethelm, MDNeurologistNeurology East at St. Vincent's East
48 Medical Park Drive East, Ste. 351
Birmingham, AL 35235
(205) 836-9366
AlaskaDavid M. Koeller, MDClinical Genetics, PediatricsAK Genetics Clinic
3601 C Street, Suite 322
Anchorage, AK 99503
(907) 269-3430
ArizonaKara Lewis, MDPediatric NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaClarimar Borrero-Mejas, MDPediatrics, Pediatric NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaJohn F. Kerrigan, MDSeizure Monitoring, Epilepsy surgery, Refractory Epilepsy, Pediatrics, Pediatric NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaSaunder M. Bernes, MDPediatrics, Pediatric NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaRobert D. Little, MDPediatric Neurology
Phoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaKorwyn L. Williams, MD, PhDNeurophysiology, ICU Monitoring, Epilepsy, Child NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaAllen M. Kaplan, MDRehabilitation, Pediatrics, Pediatric Neurology, Neurofibromatosis, Neuro-OncologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaReena G. Rastogi, MDPediatric NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaAngus A. Wilfong, MDVNS therapy, Seizure disorders, Laser therapy, Ketogenic diet, Epilepsy surgery, Epilepsy, EEG monitoringPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaBrian L. Appavu, MDPediatric Stroke, EpilepsyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaVarina L. Boerwinkle, MDNeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaDaniel J. Crawford, DNPNeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaRichard E. Frye, MD, PhDNeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaEric V. Hastriter, MDNeurologyPhoenix Children's Southwest Valley Specialty Care Center
1665 N. Avondale Blvd.
Avondale, Arizona 85392
(602) 933-0005
ArizonaCarolyn E. Hickman, PhD, RN, CPNPNeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaRanda G. Jarrar, MDPediatrics, Pediatric Neurology, Pediatric EMG, Intraoperative Monitoring, Epileptology, EpilepsyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaMichael C. Kruer, MDPediatric Movement, Disorders NeurogeneticsPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaIris Marku, PNPNeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArizonaMatthew M. Troester, DOSleep Medicine, Pediatric Epilepsy, Neurophysiology, Child NeurologyPhoenix Children's Hospital - Main
1919 E. Thomas Rd.
Phoenix, Arizona 85016
(602) 933-1000
ArkansasKnow of a provider in Arkansas? Fill out the form on the right!
CaliforniaKeith Van Haren, MDLeukodystrophies,
Autoimmune Diseases of the Nervous System,
Neurology - Child Neurology
Stanford University Medical Center
Child Neurology
730 Welch Rd Ste 206
Palo Alto, CA 94304
(650) 723-0993
CaliforniaRaman Sankar, MD, PhDPediatric NeurologyChildren's Health Center
200 UCLA Medical Plaza, Suite 265
Los Angeles, California 90095


Santa Monica - Pediatrics, Primary & Specialty Care
1260 15th Street
Suite 1024
Santa Monica, California 90404
Los Angeles: (310) 825-6196
Santa Monica: (310) 825-0867
CaliforniaBrent L. Fogel, MD, PhDNeurology, Neurodevelopmental DisabilitiesNeurological Services
300 UCLA Medical Plaza
Suite B200
Los Angeles, California 90095
(310) 794-1195
CaliforniaDr. Yvette BordelonNeurologyNeurological Services
300 UCLA Medical Plaza
Suite B200
Los Angeles, California 90095
(310) 794-1195
CaliforniaMaura R.Z. Ruzhnikov, MDNeurology - Child Neurology,
Neurogenetics,
Medical Genetics
Stanford University Medical Center
Child Neurology
730 Welch Rd., 2nd Fl
Palo Alto, CA 94304
(650) 723-0993
ColoradoJohan Van Hove, MD, PhDMedical Genetics and GenomicsChildren's Hospital Colorado Anschutz Medical Campus
13123 East 16th Ave
Aurora, CO 80045
(720) 777-1234
ConnecticutJeffery Kocsis, PhDNeurologyYale School of Medicine
333 Cedar Street
New Haven, CT 06510
(203) 937-3802
DelawareKnow of a provider in Delaware? Fill out the form on the right!
FloridaGustavo Maegawa, M.D., Ph.D.Clinical Genetics and Genomics, Biochemical Genetics, PediatricsUniversity of Florida
1600 SW Archer Road
Gainesville, FL 32610
(352) 273-9731
GeorgiaStephanie R Keller, MDPediatric NeurologyCenter for Advanced Pediatrics, 1400 Tullie Road NE 4th Floor
Atlanta, GA 30329


Childrens Physician Group - Neurology
410 Peachtree Pkwy, Suite 300
Cumming, GA 30041
Atlanta & Cumming: (404) 785-5437
HawaiiKnow of a provider in Hawaii? Fill out the form on the right!
IdahoKnow of a provider in Idaho? Fill out the form on the right!
IllinoisJennifer P. Rubin, MDNeurologyChildren's Hospital of Chicago
Outpatient Center in Northbrook
1131 Techny Road
Northbrook, Illinois 60062


Outpatient Center in Lincoln Park
2515 N. Clark Street/467 W. Deming Place
Chicago, Illinois 60614-3393
Northbrook: (312) 227-7600
Chicago: (800) 543-7362
IllinoisBarbara K. Burton, MDPKU and other metabolic disorders, lysosomal storage disorders, neurogenetic disorders, connective tissue disorders, MPS disorders, Morquio syndrome​Ann & Robert H. Lurie Children's Hospital of Chicago
225 E. Chicago Ave.
Chicago, Illinois 60611
(800) 543-7362
IndianaKnow of a provider in Indiana? Fill out the form on the right!
IowaKnow of a provider in Iowa? Fill out the form on the right!
KansasKnow of a provider in Kansas? Fill out the form on the right!
KentuckyKnow of a provider in Kentucky? Fill out the form on the right!
LouisianaKnow of a provider in Louisiana? Fill out the form on the right!
MaineKnow of a provider in Maine? Fill out the form on the right!
MarylandS. Ali Fatemi , MDNeurologyKennedy Krieger Institute
707 N. Broadway, 500V
Baltimore, MD 21205
(443) 923-2750
MarylandAnn Moser, PhDCo-Director, Peroxisomal Diseases LaboratoryKennedy Krieger Institute
707 N. Broadway
Baltimore, MD 21205
(443) 923-2761
MarylandRichard O. Jones , PhDAdministrative Laboratory Manager, Genetics LaboratoriesKennedy Krieger Institute
707 N. Broadway
Baltimore, MD 21205
(443) 923-2758
MarylandGerald Vincent Raymond, M.D.Medical GeneticsJohns Hopkins Pediatrics
200 N. Wolfe Street
Rubenstein Child Health Building
Baltimore, MD 21287
(410) 955-3071
MarylandSakkuBai Naidu , MDResearch ScientistKennedy Krieger Institute
707 N. Broadway
Baltimore, MD 21205
(443) 923-2778
MassachusettsAlessandra Biffi, MDGene therapy, Hematopoietic stem cell transplantation, Lysosomal disorders, Metabolic disordersDana-Farber Cancer Institute
450 Brookline Avenue
Boston, MA 02215
(617) 632-2204
MassachusettsFlorian Eichler, MDNeurogenetics, Developmental delays,
White matter disease,
Leukodystrophies,
Hereditary peripheral neuropathies,
Neurology,
Pediatric Neurology
Neuromuscular Diagnostic Center
165 Cambridge Street
Suite 820
Boston, MA 02114
(617) 724-6510
MassachusettsChristine N. Duncan, MDPediatric Hematology/OncologyDana-Farber Cancer Institute
450 Brookline Avenue
Boston, MA 02215
(617) 632-4882
MichiganKnow of a provider in Michigan? Fill out the form on the right!
MinnesotaDeborah L. Renaud, M.D.Medical Geneticist, Pediatrician, NeurologistMayo Clinic
200 1st St SW
Rochester, MN 55905
(507) 284-3372
MinnesotaWeston Miller, MDPediatric Blood and Marrow Transplant PhysicianPediatric BMT
D590 Mayo
420 Delaware St SE
Minneapolis, MN 55455
(612) 626-2961
MinnesotaPaul Orchard, MDPediatric Blood and Marrow Transplant PhysicianPediatric BMT
660B MCRB
420 Delaware St SE
Minneapolis, MN 55455
(612) 626-2961
MinnesotaMarc C. Patterson, M.D.NeurologyMayo Clinic
200 1st St SW
Rochester, MN 55905
(480) 301-8000
MinnesotaTroy Lund, MD, PHDPediatric Blood and Marrow Transplant PhysicianPediatric BMT
460G Masonic Cancer Research Building
425 East River Parkway
Minneapolis, MN 55455
(612) 626-2961
MinnesotaHyoung Choi, MDPediatrics Neurology w/ Special Qualification in Child NeurologyUniversity of Minnesota Physicians
720 Washington Ave SE, #200
Minneapolis, MN 55414
(612) 884-0600
MississippiKnow of a provider in Michigan? Fill out the form on the right!
MissouriMark S. Sands, PhDLysosomal storage diseases,
Neurodegenerative disorders,
Gene therapy,
Enzyme replacement,
Hematopoiesis,
Bone marrow transplantation
Division of Oncology
Section of Stem Cell Biology
Washington University Medical School
660 South Euclid Avenue - Box 8007
St. Louis, MO 63110
(314) 362-5494
MontanaKnow of a provider in Montana? Fill out the form on the right!
NebraskaWilliam B Rizzo, MDClinical Biochemical Genetics, Clinical Genetics,
Pediatrics
Children's Hospital & Medical Center Specialty Pediatric Center
111 N. 84th St.
Omaha, NE 68114
(402) 955-4199
NevadaKnow of a provider in Nevada? Fill out the form on the right!
New Hampshire Know of a provider in New Hampshire? Fill out the form on the right!
New JerseyKnow of a provider in New Jersey? Fill out the form on the right!
New MexicoKnow of a provider in New Mexico? Fill out the form on the right!
New YorkSusan N. Manganaro, MDNeurologyHealthConnect®
101 Nicolls Road
Stony Brook NY 11794
(631) 444-4000
New YorkCairo, Mitchell, MDPediatrics & Pediatric Hematology-OncologyMaria Fareri Children's Hospital100 Woods Road
Valhalla, NY, 10595


BCHP Bradhurst Avenue Specialty Offices
19 Bradhurst Avenue, Suites 800S & 2200N
Hawthorne, NY 10532
Valhalla: (914) 493-7997
Hawthorne: (914) 493-7997
New YorkEric J. Mallack, MDChild NeurologyWeill Cornell Medicine
Child Neurology
505 East 70th Street, Helmsley Tower, 3rd Floor
New York, NY 10021
(212) 746-3278
New YorkHeather A. Lau, MDNeuro-GeneticsNYU Neurogenetics
222 East 41st Street
New York, NY 10017
(212) 263-7744
New YorkRobert Thompson Stone, MDChild NeurologyUniversity of Rochester Medical Faculty Group
200 E River Rd.
Rochester, NY 14623, USA


Golisano Children's Hospital
601 Elmwood Ave.
Rochester, NY 14642, USA
(585) 275-2808
North CarolinaJoanne Kurtzberg, MDPediatric Bone Marrow Transplant Specialist
Duke Children's Hospital & Health Center
2301 Erwin Road
Durham, NC 27710
(919) 241-8090
North DakotaKnow of a provider in North Dakota? Fill out the form on the right!
OhioSumit Parikh, MDNeurogenetics, Metabolic & Mitochondrial Disease Cleveland Clinic Main Campus
Mail Code S60
9500 Euclid Avenue
Cleveland, OH 44195
(216) 444-5559
OhioGary Hsich, MD
Pseudotumor cerebri, leukodystrophies, lysosomal storage disorders, Pediatric Neurology Child abuse, Factitious disordersCleveland Clinic Main Campus
Mail Code S60
9500 Euclid Avenue
Cleveland, OH 44195
(216) 636-5860
OklahomaKnow of a provider in North Dakota? Fill out the form on the right!
OregonDavid M. KoellerInherited (Genetic) Disorders of MetabolismOHSU Child Development and Rehabilitation Center, Marquam Hill
707 S.W. Gaines Street
Portland, Oregon 97239
(877) 346-0640
PennsylvaniaPaul Szabolcs, MDPediatrics
Division of Blood and Marrow Transplantation/ Cellular Therapies
UPMC Children's Hospital of Pittsburgh
4401 Penn Ave., Suite 9B
Pittsburgh, PA 15224
United States
(412) 692-6740
PennsylvaniaLaura Adang, MD, PhDNeuro-inflammatory DisordersBuerger Center for Advanced Pediatric Care
3500 Civic Center Blvd., Philadelphia, PA 19104


Main Campus
3401 Civic Center Blvd., Philadelphia, PA 19104-4399
(215) 590-1000
PennsylvaniaAdeline Vanderver, MDLeukodystrophyBuerger Center for Advanced Pediatric Care
3500 Civic Center Blvd., Philadelphia, PA 19104


Main Campus
3401 Civic Center Blvd., Philadelphia, PA 19104-4399
(215) 590-1000
PennsylvaniaAmy Waldman, MDLeukodystrophyBuerger Center for Advanced Pediatric Care
3500 Civic Center Blvd., Philadelphia, PA 19104


Main Campus
3401 Civic Center Blvd., Philadelphia, PA 19104-4399
(215) 590-1000
PennsylvaniaMaria Escolar, MD, MS
Neurology
Neurology (pediatric)
Neurodevelopment in Rare Disorders
UPMC Children's Hospital of Pittsburgh
4401 Penn Ave.
Plaza Building, Floor 4
Pittsburgh, PA 15224
United States
(412) 692-9955
Rhode IslandKnow of a provider in Rhode Island? Fill out the form on the right!
South CarolinaKnow of a provider in South Carolina? Fill out the form on the right!
South DakotaKnow of a provider in South Dakota? Fill out the form on the right!
TennesseeKevin C. Ess, MD, PhDNeurology, PediatricDivision of Neurology
2200 Children's Way, 9th Floor, Doctors' Office To
Nashville, TN 37232
(615) 936-5536
TexasJoseph Ray, MDGeneticsUTMB Health Pediatric Genetics - Bay Colony
2785 Gulf Freeway South Suite 2.200
League City, TX 77573


UTMB Health Pediatric Genetics - Island East, Galveston
400 Harborside Drive Suite 103
Galveston, TX 77555
(409) 772-3466
TexasRaphael Schiffmann, MD, MHSc, FAANNeurologyBaylor Scott & White Neurometabolic & Undiagnosed Neurological Diseases
3417 Gaston Ave, Ste 935
Dallas, TX 75246
(214) 820-4655
TexasLisa T. Emrick, MDNeurologyTexas Children's Hospital
6701 Fannin Street
Suite 1250
Houston, TX 77030
United States
(832) 822-1750
UtahJoshua Leitch Bonkowsky, MD, PHD
Pediatric NeurologyEccles Primary Children’s Outpatient Services Building
81 N Mario Capecchi Drive
Salt Lake City, UT  84113
(801) 213-3599
VermontKnow of a provider in Vermont? Fill out the form on the right!
VirginiaKnow of a provider in Virginia? Fill out the form on the right!
WashingtonKnow of a provider in Washington? Fill out the form on the right!
Washington, D.C.Amy M. Pizzino, MS, CGCGenetic CounselorChildren's National
111 Michigan Avenue, NW
Washington, District of Columbia 20010
(888) 884-2327
Washington, D.C.Laura Ball, PhDHearing and Speech SpecialistChildren's National
111 Michigan Avenue, NW
Washington, District of Columbia 20010
(888) 884-2327
West VirginiaKnow of a provider in West Virginia? Fill out the form on the right!
WisconsinCharles Peters, MDPediatric & Adolescent MedicineMayo Clinic
191 Theater Road
Onalaska, WI 54650
(608) 392-5000
WisconsinIan D. Duncan, BMVS, PHD
Inherited and acquired disorders of CNS myelinUW–Madison Stem Cell and Regenerative Medicine Center
8457 WIMR II
1111 Highland Avenue
Madison, WI 53705
(608) 263-9828
WyomingKnow of a provider in Wyoming? Fill out the form on the right!
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