Trusted Resources: People and Places

Online groups, photo galleries and blogs

11 resources available:

Kathleen Buckley

Community Advocate
Team Sanfilippo Foundation
20 Lakewood Avenue
Ronkonkoma, New York, United States

Wendy Ferguson

Community Advocate
Abby Grace Foundation
PO Box 1023
Dallas, North Carolina, United States

Randy S. Gold

Community Advocate
The Mucolipidosis Type IV Foundation
1440 Spring Street NW
Atlanta, Georgia, United States

Steve Holland

Community Advocate
National MPS Society
1007 Slater Rd #220
P.O. Box 14686
Durham, North Carolina, United States

Jackie James

Community Advocate
Cure Mucolipidosis
402 Park Avenue
Belleville, Illinois, United States

Terri L. Klein

Community Advocate
National MPS Society
1007 Slater Rd #220
P.O. Box 14686
Durham, North Carolina, United States
Show more
9 resources available:

Walla Al-Hertani, MD, MS, FRCPC, FCCMG, FACMG

Geneticist
Lysosomal Storage Disease Program (BoLD)
Boston Children's Hospital
300 Longwood Avenue, Fegan, 4th Floor
Boston, Massachusetts, United States

Barbara K. Burton, MD

Geneticist
Northwestern University, Feinberg School of Medicine
Arthur J. Rubloff Building
420 E. Superior St.
Chicago, Illinois, United States

Paul Harmatz, MD

Gastroenterologist
University of California, San Francisco
1500 Owens Street
San Francisco, California, United States

Heather Lau, MD, MS

Neurologist
Yale School of Medicine
333 Cedar Street
New Haven, Connecticut, United States

Deborah Marsden, MD

Geneticist
Division of Genetics & Genomics
Boston Children's Hospital
300 Longwood Avenue, Hunnewell, 5th Floor
Boston, Massachusetts, United States

Paul Orchard, MD

Hematologist/Oncologist
Mucopolysaccharidosis (MPS) Center
University of Minnesota
660B Masonic Cancer Research Building
425 East River Parkway
Minneapolis, Minnesota, United States
Show more
11 resources available:

Beverly L. Davidson, PhD

Geneticist
Raymond G. Perelman Center for
Cellular and Molecular Therapeutics
Children’s Hospital of Philadelphia
3401 Civic Center Blvd.
Philadelphia, Pennsylvania, United States

Patricia Dickson, MD

Geneticist
Department of Pediatrics
Washington University School of Medicine in St. Louis
660 S. Euclid Ave.
St. Louis, Missouri, United States

Julie Eisengart, PhD, LP

Pediatric Neuropsychologist
Department of Pediatrics
University of Minnesota
100 Church Street SE
Minneapolis, Minnesota, United States

Maria Escolar, MD, MS

Pediatrician
Department of Pediatrics, Medical Genetics
UPMC Children's Hospital of Pittsburgh
4401 Penn Avenue, Floor 3
Pittsburgh, Pennsylvania, United States

Can Ficicioglu, MD, PhD

Geneticist
Lysosomal Storage Diseases Program
Children Hospital of Philadelphia
3401 Civic Center Blvd.
Philadelphia, Pennsylvania, United States

Coy Heldermon, MD, PhD

Oncologist
University of Florida Health
1549 Gale Lemerand Drive
Second Floor
Gainesville, Florida, United States
Show more
10 resources available:

Cure Mucolipidosis

402 Park Avenue
Belleville, Illinois, United States
email   website  

Cure Sanfilippo Foundation

P.O. Box 6901
Columbia, South Carolina, United States
email   phone   website  

Hide and Seek Foundation

6475 East Pacific Coast Highway
Suite 466
Long Beach, California, United States
email   phone   website  

MPS Europe

Herstallstraße 35
Aschaffenburg, Bavaria, Germany
email   phone   website  

MPS Society UK

MPS House
Repton Place, White Lion Road
Amersham, Buckinghamshire, United Kingdom
email   phone   website  
Show more
9 resources available:

Boston Children’s – Lysosomal Storage Disease Program (BoLD)

300 Longwood Avenue
Boston, 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 Street
Baltimore, Maryland, United States
phone   website  

Mass General – Lysosomal Storage Disorders Program

Developmental Neurogenetics Program
Charles 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 Program
Division of Medical Genetics
1428 Madison Ave (Cross street 99th)
New York, New York, United States
email   phone   website  
Show more