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Comprehensive Care Centers

NNPDF has created the following listing of medical institutions that have experience in caring for and treating Niemann-Pick disorders. This project is supported by the NNPDF Scientific Advisory Board and we are proud to offer this valuable resource to our families as they search for medical care and treatment.

This information has been provided to us by the institutions. If you are connected with a medical team that would like to be added to the NNPDF Comprehensive Care Centers listing, please contact Laurie Turner at lturner@nnpdf.org.

As always, please discuss any medical care decisions with your primary care provider.

*Subject to change. List is in development.

ASMD Comprehensive Care Centers

CALIFORNIA:  UCSF Benioff Children’s Hospital – San Francisco, CA
GEORGIA:  Emory University School of Medicine – Atlanta, GA
NEW YORK:  Children’s Hospital at Montefiore – Bronx, NY
OHIO:  Cincinnati Children’s Hospital Medical Center – Cincinnati, OH


UCSF Benioff Children’s Hospital San Francisco

San Francisco, CA

Number of ASMD Patients:  Unknown
Practice Coordinator:
  Eakta Sharma
Direct Line:  415-476-1376
Email:  eakta.sharma@ucsf.edu
Appointment Line:  415-476-2757 option #1
Website:  ucsfbenioffchildrens.org
Average length of time for new patient to be seen:  2-3 months

Specialists with expertise in managing patients with ASMD:

  • Pediatric Metabolic Specialist
  • Nutritionist/Registered Dietitian

Emory University School of Medicine

Atlanta, GA

Number of ASMD Patients:  1-5
Appointment Line:  404-778-8565 or 404-778-8570
Website:  med.emory.edu
Average length of time for new patient to be seen:  1-2 months

Specialists with expertise in managing patients with ASMD:

  • Designated providers are available by referral with specialties that are familiar with Lysosomal Storage Disorders.

Children’s Hospital at Montefiore

Bronx, NY

Number of ASMD Patients:  20+
Clinical Coordinator:
  Shanice Hamilton
Email:  shanice.hamilton@einsteinmed.org
Appointment Line:  718-741-2323
Website:  cham.org
Average length of time for new patient to be seen:  Days to Weeks

Specialists with expertise in managing patients with ASMD:

  • Pediatric Neurologist
  • Pediatric Hematologist
  • Pediatric Ophthalmologist
  • Pediatric Metabolic Specialist
  • Pediatric Pulmonologist
  • Pediatric Gastroenterologist
  • Nutritionist/Registered Dietitian
  • Adult Neurologist
  • Adult Hematologist
  • Adult Ophthalmologist
  • Adult Endocrinologist
  • Adult Pulmonologist
  • Adult Gastroenterologist

Cincinnati Children’s Hospital Medical Center

Cincinnati, OH

Number of ASMD Patients:  1-5
Clinical Coordinator:
  Fran Rose
Email:  frances.rose@cchmc.org
Appointment Line:  513-636-9429
Website:  cincinnatichildrens.org
Average length of time for new patient to be seen:  Urgent 1 week, non-urgent 4-6 weeks

Specialists with expertise in managing patients with ASMD:
*No current adult ASMD patients

  • Pediatric Ophthalmologist
  • Pediatric Metabolic Specialist
  • Pediatric Pulmonologist
  • Pediatric Gastroenterologist
  • Nutritionist/Registered Dietitian

*Subject to change. List is in development.


NPC Comprehensive Care Centers

CALIFORNIA:  UCSF Benioff Children’s Hospital Oakland – Oakland, CA
GEORGIA:  Emory University School of Medicine – Atlanta, GA
ILLINOIS:  Rush University Medical Center – Chicago, IL
MASSACHUSETTS:  Boston Children’s Hospital – Boston, MA
MINNESOTA:  Mayo Clinic – Rochester, MN
OHIO:  Cincinnati Children’s Hospital Medical Center – Cincinnati, OH


UCSF Benioff Children’s Hospital Oakland

Oakland, CA

Number of NPC Patients:  25+
Clinical Coordinator: 
Karen Barca
Direct Line: 5 10-428-3631
Email:  karen.barca@ucsf.edu
Appointment Line:  510-428-3631
Website:  childrenshospitaloakland.org
Average length of time for new patient to be seen:  1-2 weeks

Specialists with expertise in managing patients with NPC:

  • Pediatric Gastroenterologist
  • Pediatric Hematologist
  • Pediatric Neurologist
  • Pediatric Psychiatrist
  • Pediatric Pulmonologist
  • Nutritionist/Registered Dietitian
  • Adult Gastroenterologist
  • Adult Hematologist
  • Speech & Language Pathologist

Emory University School of Medicine

Atlanta, GA 

Number of NPC Patients:  5-10
Appointment Line:  404-778-8565 or 404-778-8570
Website:  med.emory.edu
Average length of time for new patient to be seen:  1-2 months

Specialists with expertise in managing patients with NPC:

  • Designated providers are available by referral with specialties that are familiar with Lysosomal Storage Disorders.

Rush University Medical Center

Chicago, IL 

Number of NPC Patients:  50+

Clinical Coordinator:  Santana Patterson
Email:  santanna_patterson@rush.edu

Clinical Coordinator:  Orsalya Albert
Email:  orsolya_k_albert@rush.edu

Appointment Line:  312-942-4036
Website:  rush.edu
Average length of time for new patient to be seen:  1-2 weeks

Specialists with expertise in managing patients with NPC:

  • Pediatric Gastroenterologist
  • Pediatric Hematologist
  • Pediatric Neurologist
  • Pediatric Pulmonologist
  • Nutritionist/Registered Dietitian
  • Adult Gastroenterologist
  • Adult Neurologist
  • Adult Psychiatrist
  • Speech & Language Pathologist

Boston Children’s Hospital

Boston, MA

Number of NPC Patients:  5-10
Clinical Coordinator: 
Aishwarya Siddharth
Email:  aishwarya.siddarth@childrens.harvard.edu
Appointment Line:  617-355-6394
Website:  childrenshospital.org
Average length of time for new patient to be seen:  1-4 weeks

Specialists with expertise in managing patients with NPC:

  • Pediatric Gastroenterologist
  • Pediatric Hematologist
  • Pediatric Neurologist
  • Pediatric Psychiatrist
  • Pediatric Pulmonologist
  • Nutritionist/Registered Dietitian

Mayo Clinic

Rochester, MN 

Number of NPC Patients:  30+
Appointment Line:  507-284-9974
Website:  mayoclinic.org
Average length of time for new patient to be seen:  3 weeks

Specialists with expertise in managing patients with NPC:

  • Pediatric Gastroenterologist
  • Pediatric Hematologist
  • Pediatric Neurologist
  • Pediatric Psychiatrist
  • Pediatric Pulmonologist
  • Nutritionist/Registered Dietitian
  • Adult Gastroenterologist
  • Adult Hematologist
  • Adult Neurologist
  • Adult Psychiatrist
  • Adult Pulmonologist
  • Speech & Language Pathologist

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