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Comprehensive Care Centers

Comprehensive Care Centers

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NNPDF has created a listing of medical institutions that have experience in caring for and treating Niemann-Pick disorders. This project is supported by our 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.
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ASMD Comprehensive Care Centers         NPC Comprehensive Care Centers .



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ASMD Comprehensive Care Centers*

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  • 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

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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

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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.

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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

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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

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*Subject to change. List is in development.



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NPC Comprehensive Care Centers*

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  • 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

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UCSF Benioff Children’s Hospital  Oakland, CA

Number of NPC Patients:  25+
Clinical Coordinator:
  Karen Barca
Direct Line:  510-428-3631
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

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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.

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Rush University Medical Center
  Chicago, IL

Number of NPC Patients:  50+
Clinical Coordinators:
Santana Patterson
Email:  santanna_patterson@rush.edu

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

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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   

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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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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 NPC:

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

…..* Pediatric specialist will see adult patients – no adult providers at CCHMC

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*Subject to change. List is in development.