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
ARIZONA: Phoenix Children’s Hospital – Phoenix, AZ
CALIFORNIA: UCSF Benioff Children’s Hospital – San Francisco, CA
GEORGIA: Emory University School of Medicine – Atlanta, GA
ILLINOIS: Ann & Robert H. Lurie Children’s Hospital of Chicago – Chicago, IL
NEW YORK: Children’s Hospital at Montefiore – Bronx, NY
OHIO: Cincinnati Children’s Hospital Medical Center – Cincinnati, OH
Ann & Robert H. Lurie Children’s Hospital of Chicago
Chicago, IL
Number of ASMD Patients: 12
Practice Coordinator: Rachel Hickey
Direct Line: 312-227-6120
Email: rahickey@luriechildrens.org
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 Ophthalmologist
- Pediatric Metabolic Specialist
- Pediatric Pulmonologist
- Pediatric Gastroenterologist
- Nutritionist/Registered Dietitian
Through partnership with Northwestern University:
- Adult Neurologist
- Adult Hematologist
- Adult Ophthalmologist
- Adult Endocrinologist
- Adult Pulmonologist
- Adult Gastroenterologist
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.
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.
Phoenix Children’s Hospital
Phoenix, AZ
Number of ASMD patients: 5
Practice Coordinator: Kara Woolgar, RN
Direct Line: 602-933-3307
E-mail: kwoolgar@phoenixchildrens.com
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 patient 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
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
NPC Comprehensive Care Centers
ARIZONA: Phoenix Children’s Hospital – Phoenix, AZ
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
NEW YORK: NYU Langone Health
OHIO: Cincinnati Children’s Hospital Medical Center – Cincinnati, OH
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
Cincinnati Children’s Hospital Medical Center
Cincinnati, OH
Number of NPC Patients: 5-10
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 Gastroenterologist
- Pediatric Neurologist
- Pediatric Psychiatrist
- Pediatric Pulmonologist
- Nutritionist/Registered Dietitian
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.
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
NYU Langone Health
New York, NY
Number of NPC Patients: <10
Clinical Coordinator: Samantha Roopnarine (RN)
Direct Line: 929-455-5630
Email: samantha.roopnarine@nyulangone.org
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
- Nutritionist/Registered Dietitian
- Speech & Language Pathologist
Phoenix Children’s Hospital
Phoenix, AZ
Number of NPC patients: 6
Practice Coordinator: Kara Woolgar, RN
Direct Line: 602-933-3307
E-mail: kwoolgar@phoenixchildrens.com
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 patient 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
Rush University Medical Center
Chicago, IL
Number of NPC Patients: 50+
Clinical Coordinator: Kendall Robbins
Email: kendall_p_robbins@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
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