Trusted Resources: People and Places
Online groups, photo galleries and blogs
9 resources available:
Walla Al-Hertani, MD, MS, FRCPC, FCCMG, FACMG
GeneticistLysosomal Storage Disease Program (BoLD)
Boston Children's Hospital
300 Longwood Avenue, Fegan, 4th Floor
Boston, Massachusetts, United States
Barbara K. Burton, MD
GeneticistNorthwestern University, Feinberg School of Medicine
Arthur J. Rubloff Building
420 E. Superior St.
Chicago, Illinois, United States
Paul Harmatz, MD
GastroenterologistUniversity of California, San Francisco
1500 Owens Street
San Francisco, California, United States
Heather Lau, MD, MS
NeurologistYale School of Medicine
333 Cedar Street
New Haven, Connecticut, United States
Deborah Marsden, MD
GeneticistDivision of Genetics & Genomics
Boston Children's Hospital
300 Longwood Avenue, Hunnewell, 5th Floor
Boston, Massachusetts, United States
Paul Orchard, MD
Hematologist/OncologistMucopolysaccharidosis (MPS) Center
University of Minnesota
660B Masonic Cancer Research Building
425 East River Parkway
Minneapolis, Minnesota, United States
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11 resources available:
Beverly L. Davidson, PhD
GeneticistRaymond G. Perelman Center for
Cellular and Molecular Therapeutics
Children’s Hospital of Philadelphia
3401 Civic Center Blvd.
Philadelphia, Pennsylvania, United States
Patricia Dickson, MD
GeneticistDepartment of Pediatrics
Washington University School of Medicine in St. Louis
660 S. Euclid Ave.
St. Louis, Missouri, United States
Julie Eisengart, PhD, LP
Pediatric NeuropsychologistDepartment of Pediatrics
University of Minnesota
100 Church Street SE
Minneapolis, Minnesota, United States
Maria Escolar, MD, MS
PediatricianDepartment of Pediatrics, Medical Genetics
UPMC Children's Hospital of Pittsburgh
4401 Penn Avenue, Floor 3
Pittsburgh, Pennsylvania, United States
Can Ficicioglu, MD, PhD
GeneticistLysosomal Storage Diseases Program
Children Hospital of Philadelphia
3401 Civic Center Blvd.
Philadelphia, Pennsylvania, United States
Coy Heldermon, MD, PhD
OncologistUniversity of Florida Health
1549 Gale Lemerand Drive
Second Floor
Gainesville, Florida, United States
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11 resources available:
Kathleen Buckley
Community AdvocateTeam Sanfilippo Foundation
20 Lakewood Avenue
Ronkonkoma, New York, United States
Wendy Ferguson
Community AdvocateAbby Grace Foundation
PO Box 1023
Dallas, North Carolina, United States
Randy S. Gold
Community AdvocateThe Mucolipidosis Type IV Foundation
1440 Spring Street NW
Atlanta, Georgia, United States
Steve Holland
Community AdvocateNational MPS Society
1007 Slater Rd #220
P.O. Box 14686
Durham, North Carolina, United States
Jackie James
Community AdvocateCure Mucolipidosis
402 Park Avenue
Belleville, Illinois, United States
Terri L. Klein
Community AdvocateNational MPS Society
1007 Slater Rd #220
P.O. Box 14686
Durham, North Carolina, United States
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10 resources available:
Cure Sanfilippo Foundation
P.O. Box 6901Columbia, South Carolina, United States
email phone website
Hide and Seek Foundation
6475 East Pacific Coast HighwaySuite 466
Long Beach, California, United States
email phone website
MPS Society UK
MPS HouseRepton Place, White Lion Road
Amersham, Buckinghamshire, United Kingdom
email phone website
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9 resources available:
Boston Children’s – Lysosomal Storage Disease Program (BoLD)
300 Longwood AvenueBoston, Massachusetts, United States
phone website
CHOC-Harbor UCLA MPS Multidisciplinary Center
1201 W. La Veta Ave.Orange, California, United States
phone website
CHOP – Lysosomal Storage Disease (LSD) Center
3401 Civic Center Blvd.Philadelphia, Pennsylvania, United States
phone website
Johns Hopkins – Lysosomal Storage Disease Center
600 N. Wolfe StreetBaltimore, Maryland, United States
phone website
Mass General – Lysosomal Storage Disorders Program
Developmental Neurogenetics ProgramCharles River Plaza, North Building
5th Floor, Suite 5240
Massachusetts General Hospital
185 Cambridge Street
Boston, Massachusetts, United States
phone website
Mount Sinai – Lysosomal Storage Disease Program
Lysosomal Storage Disease ProgramDivision of Medical Genetics
1428 Madison Ave (Cross street 99th)
New York, New York, United States
email phone website
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