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Navigating Diagnosis & Treatment

Find a Care Clinic

NNPDF has created the following listing of academic and private practice clinics

in the US that have experience in caring for and treating ASMD and/or NPC. We are pleased to offer this valuable resource to our patients and families as they search for diagnosis, medical care and treatment.

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

ASMD Care Clinics
NPC Care Clinics

Interested in joining our Care Clinics listing?

Information in this listing is provided to us by the listed providers. To have your clinic included in our Care Clinics listing, please complete the appropriate application form below. Please submit your completed PDF form to [email protected].

ASMD Application Forms

ASMD Online Application →

ASMD Fillable/Printable PDF Application ↓

NPC Application Forms

NPC Online Application →

NPC Fillable/Printable PDF Application ↓

Questions? Contact us at [email protected].

We are committed to:

  • Supporting and empowering patients and families affected by NPD by meeting them where they are in their NPD journey.
  • Upholding a balanced, unbiased approach with families, researchers, clinicians and industry to move treatment forward to provide a variety of therapies and to work together toward a cure. We encourage full transparency among all stakeholders in the Niemann-Pick disease community.
  • Supporting basic science and clinical research through awareness and collaborative funding initiatives.

ASMD Care Clinics

Arizona
California
Georgia
Illinois
Massachusetts
New York
Ohio

Arizona

Phoenix Children’s Hospital

Phoenix, AZ

Number of ASMD patients:  5
Main Line: 602-933-1000
Website:  phoenixchildrens.org/centers-programs/lysosomal-storage-disease-center
Average length of time for new patient to be seen:  2-4 weeks

Specialists with expertise in managing patients with ASMD:
  • Will refer to Adult Specialist as needed
  • Pediatric Metabolic Specialist – Evaluate and treat pediatric and adult patients
  • Pediatric Gastroenterologist/Hepatologist
  • Pediatric pulmonologist
  • Pediatric neurologist
  • Additional designated providers are available by referral with specialties that are familiar with lysosomal storage disorders

California

UCSF Benioff Children’s Hospital San Francisco

San Francisco, CA

Number of ASMD patients:  Unknown
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
  • RD, Registered Dietitian or Nutritionist

Georgia

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.

Illinois

Ann & Robert H. Lurie Children’s Hospital of Chicago

Chicago, IL

Number of ASMD patients:  13
Practice Coordinator:  Rachel Hickey
Direct Line:  312-227-6120
Email:  [email protected]
Appointment Line:  312-227-6120
Website:  luriechildrens.org/en/specialties-conditions/pediatric-genetic-disorders
Average length of time for new patient to be seen:  2-4 weeks

Specialists with expertise in managing patients with ASMD:
  • Pediatric Neurologist
  • Pediatric Hematologist
  • Pediatric Metabolic Specialist
  • Pediatric Pulmonologist
  • Pediatric Gastroenterologist
  • RD, Registered Dietitian or Nutritionist

Through partnership with Northwestern University:

  • Adult Neurologist
  • Adult Hematologist
  • Adult Ophthalmologist
  • Adult Endocrinologist
  • Adult Pulmonologist
  • Adult Gastroenterologist

Massachusetts

Boston Children’s Hospital

Boston, MA

Type of Clinic:  Academic Center
Population Age:  Pediatric
Clinical Coordinator:  Genetics and Metabolism Clinic
Email:  [email protected]
Phone Number:  617-355-6394
Website:  childrenshospital.org
Number of ASMD patients:  1-5
Average length of time for new patient to be seen:  Urgent within 1 to 2 weeks, Routine 4 to 6 weeks

Specialists with expertise in managing patients with ASMD:
  • Cardiologist
  • Gastroenterologist
  • Genetics Counselor
  • Hematologist
  • Neurologist
  • Psychiatrist
  • Pulmonologist
  • RD, Registered Dietitian or Nutritionist
  • Social Worker
  • Speech-Language Pathologist

01/20/2026

New York

Children’s Hospital at Montefiore

Bronx, NY

Number of ASMD patients:  20+
Clinical Coordinator:  Shanice Hamilton
Email:  [email protected]
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
  • RD, Registered Dietitian or Nutritionist
  • Adult Neurologist
  • Adult Hematologist
  • Adult Ophthalmologist
  • Adult Endocrinologist
  • Adult Pulmonologist
  • Adult Gastroenterologist

Ohio

Cincinnati Children’s Hospital Medical Center

Cincinnati, OH

Number of ASMD patients:  1-5
Clinical Coordinator: Laurie Anne Bailey
Email:  [email protected]
Appointment Line:  800-647-4805
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
  • RD, Registered Dietitian or Nutritionist

NPC Care Clinics

Arizona
California
Georgia
Illinois
Massachusetts
Minnesota
New York
Ohio

Arizona

Phoenix Children’s Hospital

Phoenix, AZ

Number of NPC patients: 6
Practice Coordinator: Kara Woolgar, RN
Direct Line: 602-933-3307
E-mail: [email protected]
Appointment Line: 602-933-3307
Website: phoenixchildrens.org/centers-programs/lysosomal-storage-disease-center
Average length of time for new patient to be seen: 2-4 weeks

Specialists with expertise in managing patients with NPC:
  • Will refer to Adult Specialist as needed
  • Pediatric Metabolic Specialist – Evaluate and treat pediatric and adult patients
  • Pediatric Gastroenterologist/Hepatologist
  • Pediatric pulmonologist
  • Pediatric neurologist
  • Additional designated providers are available by referral with specialties that are familiar with lysosomal storage disorders

California

UCSF Benioff Children’s Hospital Oakland

Oakland, CA

Clinical Coordinator: Karen Barca
Direct Line: (510) 428-3885 Ext: 1202860
Email: [email protected]

Clinical Research Coordinator: Veronica Cheung, CCRP
Direct Line: (510) 428-3885 Ext: 1202752
Email: [email protected]

Appointment Line: 510-428-3631
Website: ucsfbenioffchildrens.org

Number of NPC Patients: 35+
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
  • RD, Registered Dietitian or Nutritionist
  • Adult Gastroenterologist
  • Adult Hematologist
  • Speech & Language Pathologist

Georgia

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.

Illinois

Rush University Medical Center

Chicago, IL

Type of Clinic:  Academic Center
Population Age:  Pediatric and Adult
Clinical Research Coordinator:  Sophia Mcnerney
Email:  [email protected]
Phone:  312-344-3748
Appointment Line:  312-942-4036
Website:  rush.edu
Number of NPC patients:  80+
Average length of time for new patient to be seen:  1-4 weeks

Specialists with expertise in managing patients with NPC:
  • Gastroenterologist
  • Genetic Counselor
  • Hematologist
  • Neurologist
  • Psychiatrist
  • Pulmonologist
  • RD, Registered Dietitian or Nutritionist
  • Social Worker
  • Speech-Language Pathologist

Massachusetts

Boston Children’s Hospital

Boston, MA

Type of Clinic:  Academic Center
Population Age:  Pediatric
Clinical Coordinator:  Genetics and Metabolism Clinic
Email:  [email protected]
Phone Number:  617-355-6394
Website:  childrenshospital.org
Number of NPC patients:  10-15
Average length of time for new patient to be seen:  Urgent within 1 to 2 weeks, Routine 4 to 6 weeks

Specialists with expertise in managing patients with NPC:
  • Gastroenterologist
  • Genetics Counselor
  • Hematologist
  • Neurologist
  • Psychiatrist
  • Pulmonologist
  • RD, Registered Dietitian or Nutritionist
  • Social Worker
  • Speech-Language Pathologist

01/20/2026

Minnesota

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
  • RD, Registered Dietitian or Nutritionist
  • Adult Gastroenterologist
  • Adult Hematologist
  • Adult Neurologist
  • Adult Psychiatrist
  • Adult Pulmonologist
  • Speech & Language Pathologist

New York

NYU Langone Health

New York, NY

Number of NPC patients:  <10
Clinical Coordinator:  Samantha Roopnarine (RN)
Direct Line:  929-455-5630
Email:  [email protected]
Appointment Line:  212-263-7744
Website:  med.nyu.edu/departments-institutes/neurology/divisions-centers/neurogenetics
Average length of time for new patient to be seen:  1-4 weeks upon physician review

Specialists with expertise in managing patients with NPC:
  • Pediatric Neurologist
  • Pediatric Hematologist
  • Pediatric Pulmonologist
  • Pediatric Gastroenterologist
  • Adult Psychiatrist
  • Adult Neurologist
  • Adult Hematologist
  • Adult Pulmonologist
  • Adult Gastroenterologist
  • RD, Registered Dietitian or Nutritionist
  • Speech & Language Pathologist

Ohio

Cincinnati Children’s Hospital Medical Center

Cincinnati, OH

Number of NPC patients:  5-10
Clinical Coordinator: Laurie Anne Bailey
Email:  [email protected]
Appointment Line:  800-647-4805
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 Gastroenterologist
  • Pediatric Neurologist
  • Pediatric Psychiatrist
  • Pediatric Pulmonologist
  • RD, Registered Dietitian or Nutritionist
Updated 10/20/2026

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