Collaborative Care Centers

GLUT1 Deficiency Foundation

connecting experts

centering patients

advancing care

The Collaborative Care Center designation honors exceptional hospitals and clinics that demonstrate comprehensive, multidisciplinary, and patient-centered care and work collaboratively across the GLUT1 Deficiency community to further knowledge, advance research, and support patients and families.

We are deeply grateful to these centers for their dedication to serving individuals and families affected by GLUT1 Deficiency and their commitment to being part of the Collaborative Care Network. We are honored to work alongside these teams as trusted partners in building better outcomes and brighter futures.

COLLABORATIVE CARE NETWORK

Center Directory

UNITED STATES

Ohio

CANADA

SOUTH AMERICA

EUROPE

NORTH AMERICA

United States

Arizona:

Phoenix Children's Hospital
1919 East Thomas Road
Thomas Office Building, 1st Floor
Phoenix, AZ 85016
United States

Clinic Name:
Ketogenic Diet Program, Division of Neurology

Collaborative Care Center Director:
Randa Jarrar, MD
Lisa Vanatta, MS, RDN, CSP

Primary Team Members

Lisa Vanatta, MS, RDN, CSP - Ketogenic Program Coordinator
Randa Jarrar, MD - Medical Director, Ketogenic Diet Program and Clinical Neurophysiology, Division of Neurology
Christi Sports, MS, RDN, CSP - Ketogenic Dietitian/Supervisor, Outpatient Clinical Nutrition
Jalonna Ohr, PA-C - Pediatric Neurology Physician Assistant
Tava Arnold, PhD - Psychologist, ketogenic program
Chris Kennie-Richardson, PharmD - Pharmacist
Diana Laroque, RN - Epilepsy nurse Coordinator
Shagun Kaur, MD - Clinical and Biochemical Geneticist, Division of Genetics and Metabolism

Appointment Contact

New Patient Appointment Process

Patients or family members may contact our team by phone (listed above) or email at [email protected]. Providers should place a referral to Phoenix Children’s Neurology, with reference to GLUT1 Deficiency diagnosis to establish with one of our neurologists and our ketogenic diet program. Our team will request medical records and obtain prior authorization as needed.

Once the referral has been processed, our neurology schedulers will schedule an appointment in one of our keto clinics with our multi-disciplinary team.

Initial appointments may take up to 2 ½ - 3 hours for new patients and can be completed either in person (preferable) or via telehealth. Once we have completed our initial assessment, in subsequent visits the dietitian will meet over the next several weeks to implement the diet. Follow up visits are often completed via telehealth.

All diet initiations are completed in the outpatient setting. Appointments are usually available within 2-4 weeks of referral.

Age Range of Patients

Payment/Reimbursement Accepted

Colorado:

Children's Hospital Colorado (CHCO)
Anschutz Medical Campus
13123 E 16th Avenue, B155
Aurora, CO 80045
United States

Clinic Name:
Ketogenic Diet Clinic - Neurology, Neuroscience Institute

Collaborative Care Center Directors:
Jennifer Oliver, MSN, CPNP
Chelsey Stillman, MPAS, PA-C
Alison F. Conley, MSN, CPNP

Primary Team Members

Jennifer Oliver, CPNP - Pediatric Nurse Practitioner, Child Neurology, Epilepsy Care Team medical provider
Chelsey Stillman, PA-C - Physician Associate, Child Neurology, Epilepsy Care Team medical provider
Alison Conley, CPNP - Pediatric Nurse Practitioner, Child Neurology, Epilepsy Care medical provider
Lindsay Krupp, RD - Ketogenic Dietitian
Madison Busch, RD - Ketogenic Dietitian
Natalie Cummings, RD - Ketogenic Dietitian
Children's Colorado has over 40 pediatric neurologists and epileptologists that serve as collaborators of neurology care to the ketogenic diet team for management of GLUT1 Deficiency patients, specifically addressing symptoms of seizures, abnormal movements, and other developmental concerns.

Appointment Contact

New Patient Appointment Process

All patients new to CHCO will need to establish with both a Neurologist and the Ketogenic Diet Team.

Outside provider referrals can be sent directly to Neurology at 720-777-7974.

Urgent outside provider referral for new diagnosis can go through Children's Hospital One Call at 720-777-3999 to consult with a Neurologist regarding an expedited evaluation.

Family/Self Referral can call Neurology directly 720-777-6895.

Children's Colorado Hospital website and resources:

https://www.childrenscolorado.org/health-professionals/refer/

https://www.childrenscolorado.org/doctors-and-departments/departments/neuroscience-institute/

Age Range of Patients

Payment/Reimbursement Accepted

Connecticut:

Yale New Haven Children's Hospital
35 Park Street
New Haven, CT 06511
United States

Clinic Name:
Neurology Clinic

Collaborative Care Center Directors:
Jong Rho, MD
Vinita Knight, MD

Primary Team Members

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

Florida:

Johns Hopkins All Children's Hospital
501 6th Avenue South
St. Petersburg, FL 33701
United States

See Maryland and Johns Hopkins Hospital information for details on this cross-institute collaborative center.

Georgia:

Children's Healthcare of Atlanta
2174 N. Druid Hills Road NE
CPG Neurology
Atlanta, GA 30329
United States

Clinic Name:
Ketogenic Diet Program

Collaborative Care Center Directors:
Hyoung Choi, MD
Philip Holt, MD

Primary Team Members

Meredith Johnson, MS, RDN, CSP, LD: Nutrition - Dietitian, primary inpatient ketogenic and metabolic dietitian
Paige Barrett, MSND, RD, LD: Nutrition - Dietitian, primary outpatient ketogenic dietitian
Rachel Logan, MMSc, CGC: Genetics - Certified Genetic Counselor - provides genetic counseling services
Kaylin Rush and Allyson Navia: Nursing - Ketogenic Diet Nurse Coordinators - assists with scheduling, patient care
questions, education
Dr. Anna Pinto: Epilepsy Chair (Advisor) - conducts weekly ketogenic diet team meetings
Dr. Sonam Bhalla: Epilepsy - sees patients as an epileptologist in ketogenic diet clinic along with Dr. Holt and Dr. Choi.

Appointment Contact

New Patient Appointment Process

Our referral process for the ketogenic diet program is designed to ensure timely and coordinated care for patients diagnosed with GLUT1 Deficiency. When a patient is referred to Children's ketogenic diet program by their neurologist or geneticist, our dedicated ketogenic diet nurse coordinators (Kaylin and Allyson) promptly reach out to the family to gather additional information and provide the necessary intake paperwork and release of information forms.

For patients with GLUT1 Deficiency, the case is reviewed at our next weekly care meeting, regardless of whether the paperwork has been completed, to assess the urgency of initiating the diet, discuss any known information about the patient, and coordinate scheduling for the ketogenic clinic. Typically, clinic appointments are arranged within 2-4 weeks; however, if an urgent start is warranted, a direct hospital admission may be necessary to start the diet sooner.

In the case of infant patients diagnosed with GLUT1, our nurses take immediate action by contacting the provider team, including physicians and dietitians, to ensure expedited and comprehensive care. This structured process reflects our commitment to delivering personalized, efficient, and high-quality care to all our patients.

Age Range of Patients

Payment/Reimbursement Accepted

Illinois:

The University of Chicago Medicine
Comer Children's Hospital
5841 S. Maryland Ave
MC 3055
Chicago, IL 60637
United States

Clinic Name:
Pediatric Epilepsy Center's Ketogenic Diet Program

Collaborative Care Center Directors:
Douglas Nordli Jr., MD
Audrey Oetomo, CPNP

Primary Team Members

Dr. Douglas Nordli Jr. - Director
Audrey Oetomo, MSN, CPNP - Neurology Nurse Practitioner, Co-Director
Dr. Sho Yano - Neurogeneticist
Dr. Behzad Elahi - Neurologist and Movement Disorder Specialist
Dr. Joseph Chapman - Pediatric Gastroenterologist
Dr. Mohamed Taha - Neurology, Epilepsy Fellow
Stephanie Schimpf, RDN, LDN, CNSC - Registered Dietitian
Ellen Mang, MS, RDN, LDN, CNSC - Registered Dietitian
Joy Johnican, RN, MSN/MBA - Registered Nurse
Emily Sheskey PharmD, BCPPS - Neurology Clinical Pharmacist
Willa Zimmerman, MSW, LSW - Neurology Social Worker
Richard Cashman - Neurology Patient Access Specialist

Appointment Contact

New Patient Appointment Process

Patients or family members may contact the medical center by phone or email to express interest in the GLUT1 Deficiency Ketogenic Diet Clinic. After registration is completed, a member of the ketogenic diet team will reach out, typically within one week, to schedule an appointment. If medical records are not available through the electronic medical record system, a patient access specialist and neurology coordinator will assist with obtaining them.

Age Range of Patients

Payment/Reimbursement Accepted

Ann & Robert H Lurie Children's Hospital
225 E Chicago Avenue
Box 29
Chicago, IL 60611
United States

Clinic Name:
Epilepsy Center- Ketogenic Diet Clinic

Collaborative Care Center Directors:
Savannah Morris, MS, APRN, CPNP
Robyn Blackford, RDN, LDN

Primary Team Members

Savannah Morris, APRN - Co Director, Clinician, primary receiving clinician for GLUT1DS referrals
Robyn Blackford, RD, LDN - Co Director; Registered Dietitian, Ketogenic Diet Clinical Coordinator
Wesley Lowman RD, LDN - Registered Dietitian
Nicole Haggerty MS, RD, LDN - Registered Dietitian
Chu-Yi Huang MS, RD, LDN - Registered Dietitian
Dana Roscoe MS, RD, LDN - Registered Dietitian
Kelly Neven, APRN - Clinician
Breanne Hosford, APRN - Clinician
Megan Masters, APRN - Clinician
Megan Keeler, MSW, LSW, MPH - Social Worker
Elizabeth Schill, Ed.S. - Education Liaison

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

Maryland:

Johns Hopkins Hospital
Suite 2158
200 North Wolfe Street
Baltimore, MD 21287
United States

Clinic Name:
Johns Hopkins Ketogenic Diet Center

Collaborative Care Center Directors:
Eric Kossoff, MD
Mackenzie Cervenka, MD

Primary Team Members

Eric Kossoff MD - CoDirector - Epileptologist, Ketogenic Diet Physician
Mackenzie Cervenka MD - CoDirector - Epileptologist, Ketogenic Diet Physician
Babitha Haridas MD - Epileptologist, Ketogenic Diet Physician
Tanya McDonald MD PhD - Epileptologist, Ketogenic Diet Physician
Neel Parikh, MD - Epileptologist, Ketogenic Diet Physician
Angel Hernandez MD - Epileptologist
Zahava Turner RD - Pediatric Ketogenic Dietitian
Stacey Bessone RD - Pediatric Ketogenic Dietitian
Amy Merwarth RD - Pediatric Ketogenic Dietitian
Bobbie Henry-Barron RD - Adult Ketogenic Dietitian
Alexander Kim MD - Geneticist/Metabolic Physician
Christa Habela MD PhD - Geneticist/Metabolic Physician, Epileptologist
Heather Riordan MD - Pediatric Movement Disorder Specialist
Ankur Butala MD - Adult Movement Disorder Specialist
Aaron Hauptman MD - Pediatric psychiatrist
Cynthia Salorio PhD - Pediatric neuropsychologist
Megan Reiter RN - Epilepsy Nurse
Rebecca Fisher RN - Epilepsy Nurse
Jaimie Lansinger - Pediatric Clinic Coordinator
Joanne Barnett - Adult Clinic Coordinator

Appointment Contact

New Patient Appointment Process

We have all families contact us usually by email or phone and Helena and Joanne will then handle the intake. Often Becky (adult RN) or Megan (pediatric RN) will reach out to new families where ketogenic diet services are the request by phone to discuss.

Once that triage has occurred, and insurance is approved, Becky/Megan will reach out to Dr. Kossoff and Dr. Cervenka with the information. We both have specific "keto clinics" that children and adults on ketogenic diet therapy are scheduled in. If the patients is NOT on the diet, they are scheduled in a "regular" epilepsy clinic spot.

Age Range of Patients

Payment/Reimbursement Accepted

This is a collaborative clinic across Johns Hopkins Pediatric Ketogenic Diet Center, Johns Hopkins Adult Epilepsy Diet Center, Johns Hopkins All Children’s Hospital (St. Petersburg, Florida), and Kennedy Krieger Institute.

Minnesota:

Gillette Children's Specialty Healthcare
200 University Avenue East
St Paul, MN 55101
United States

Clinic Name:
Gillette Children's Ketogenic Diet Clinic

Collaborative Care Center Director:
Nicole Williams Doonan, MD

Primary Team Members

Nicole Williams Doonan, MD - Clinic Director, Pediatric Neurologist
Denise Leighty, APRN, CNP - Pediatric Neurology
Tori Bahr, MD - Complex Care Internal Medicine and Pediatrics
Deana Thomasson, APRN, CNP - Complex Care Pediatrics
Karri Larson, RD - Registered Dietitian
Lynn Jasperson, PharmD - Pharmacist
Lane Toring, PharmD - Pharmacist
Jou Xiong, RN - Clinic Nurse Care Coordinator

Appointment Contact

New Patient Appointment Process

Patients may be referred to the ketogenic diet clinic from either an internal or external provider. An external referral is faxed to the Referral Management Center (RMC). This department will create a patient chart and obtain outside medical records. A message is also sent to the Ketogenic Care Coordinator about all internal and external referrals. The Care Coordinator will offer a time for the patient to be seen in the pre-initiation ketogenic clinic, usually within a week.

The purpose of this clinic is to review the patient's medical history and provide education about the ketogenic diet and how dietary therapy is used as a treatment for GLUT1. During this clinic visit, the patient and family will meet the neurology APRN and Registered Dietitian. The RMC will contact the family with the date and time. After the appointment, arrangements will be made to admit the patient to the hospital to initiate the ketogenic diet. Admission is usually scheduled within 1-2 weeks after being seen in the ketogenic pre-initiation clinic.

Age Range of Patients

Payment/Reimbursement Accepted

Missouri:

Washington University
St. Louis Children's Hospital
Washington University, Department of Neurology
660 South Euclid Avenue
St. Louis, MO 63110
United States

Clinic Name:
Dietary Therapies Clinic for Neurological Disorders

Collaborative Care Center Director:
Liu Lin Thio, MD, PhD

Primary Team Members

Appointment Contact

New Patient Appointment Process

Steps for scheduling a new patient with GLUT1 Deficiency:

1) Patient’s family or referring provider contacts our scheduling team

2) Scheduling team determines whether we accept the patient’s insurance

3) Scheduling team obtains reason for appointment and medical records

4) Pediatric neurology/epilepsy triage team composed of physicians reviews case

5) Patients with GLUT1 Deficiency will be referred to the Dietary Therapies Clinic for Neurological Disorders

6) Medical Director and Nurse Coordinator will review case to determine urgency for appointment and schedule an appointment as appropriate. Scheduling patients with GLUT1 Deficiency typically occurs within one month.

7) Nurse Coordinator will invite patient and family to attend our Ketogenic Diet Introductory Class

Age Range of Patients

Payment/Reimbursement Accepted

New York:

Columbia University Irving Medical Center
180 Fort Washington Ave
Harkness Pavilion, 5th floor
New York, NY 10032
United States

Clinic Name:
Pediatric Neurology

Collaborative Care Center Director:
Tristan T. Sands, MD, PhD

Primary Team Members

Tristan T. Sands, MD, PhD - epileptologist, center director
Danielle McBrian, MD - ketogenic diet program director
Emily Mathos, RD, CDN, CNSC - ketogenic diet dietician
Linn Katus, MD - movement disorders specialist
Darryl De Vivo, MD - GLUT1 Deficiency specialist (retired), available to Dr. Sands for consultation
Umrao Monani, PhD - GLUT1 Deficiency researcher
Kris Engelstad, MS, CGC - genetic counselor, clinical research

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

NewYork-Presbyterian/Weill Cornell Medical Center
505 East 70th Street
Helmsley Tower, 3rd Floor
New York, NY 10021
United States

Clinic Name:
Rare Brain Disorders

Collaborative Care Center Director:
Juan Pascual, MD, PhD

Primary Team Members

Appointment Contact

New Patient Appointment Process

Please contact the clinic for a form that will guide with the intake process. The form will include the following details:

Full name
Date of birth
Main symptoms from most to least severe with approximate dates of onset and evolution of each symptom
Name of physicians who provided opinions
Treatments received and effects (positive, neutral, negative)
Referring providers full name, specialty practiced, hospital, address, phone & fax number
Agreements relevant to physician referrals including access to records if electronic and paper records if not accessible by Weill Cornell
A complete form will be forwarded to and approved by Dr. Juan Pascual prior to setting up an appointment
The current plan for appointment scheduling is for Friday afternoons.

Age Range of Patients

Payment/Reimbursement Accepted

Ohio:

Nationwide Children's Hospital
700 Children's Drive
Columbus, OH 43205
United States

Collaborative Care Center Directors:
Toni Pearson, MD, MBBS

Primary Team Members

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

Oregon:

Oregon Health and Science University
3181 SW Sam Jackson Park Rd
Portland, OR 97239
United States

Clinic Name:
GLUT1 Deficiency Clinic

Collaborative Care Center Directors:
Rodrigo Starosta, MD, PhD, FACMG

Primary Team Members

Appointment Contact

New Patient Appointment Process

Referrals are taken in by the scheduling and patient assistance department (PASR) according to pre-established workflows.

For the GLUT1 CCC, there will be a request for medical records that will be coordinated by PASR, followed by medical review of records by the CCC participants.

Once the patient is approved (for high suspicion of GLUT1 Deficiency or for a confirmed diagnosis of GLUT1 Deficiency), the patient/family will be called to schedule an appointment with Neurology and Genetics. The goal will be for referrals to be called to schedule within a month of records being received.

Age Range of Patients

Payment/Reimbursement Accepted

Pennsylvania:

Children's Hospital of Philadelphia
3500 Civic Center Blvd
Philadelphia, PA 19104
United States

Clinic Name:
Division of Neurology - Neuroscience Center
Dietary Treatment Program

Collaborative Care Center Directors:
Eric Marsh, MD, PhD
Christina Bergqvist, MD

Primary Team Members

Appointment Contact

New Patient Appointment Process

After families contact our center to complete an intake, they are registered in our electronic medical record system. Families are asked to send appropriate outside records if they cannot be obtained through the EMR. After record review, patients are either scheduled for a visit, or insurance information is sent to financial clearance for approvals as needed. Families are notified once all relevant authorizations and approvals are in place and an appointment has been scheduled. New patient visits are typically available within 2-3 months.

Age Range of Patients

Payment/Reimbursement Accepted

Texas:

Cook Children's Medical Center
801 Seventh Avenue
Fort Worth, TX 76104
United States

Clinic Name:
The Jane and John Justin Center for Mind Health
Ketogenic Diet Clinic

Collaborative Care Center Directors:
Jaehyung Lim, MD
Christos Papadelis, PhD
Paul Thornton, MD

Primary Team Members

Appointment Contact

New Patient Appointment Process

All of the above are taken care of by a dedicated staff of insurance specialists, schedulers and clinical coordinators. Referring Physicians are requested to fax a referral (or if using EPIC EMR use the internal referral process) outlining their reason for referral, the urgency of the referral, the insurance information and relevant medical records to help us determine the needs of the patient.

The family are contacted by a referral coordinator, and the appointment is set up. Once that is completed patients may do their pre clinic forms and other communication through Cook Children's My Chart.

For patients requiring hospitalization we have a dedicated staff to get insurance authorization and to help families understand the costs and to help those in need of financial support. We use our clinical coordinators to help ensure that families who need to see multiple specialists can do so in the most efficient way.

For out of state and international referrals we have our global Health team become involved to smooth the process.

Age Range of Patients

Payment/Reimbursement Accepted

Texas Children's Hospital
6701 Fannin Street
Houston, TX 77030
United States

Clinic Name:
The Blue Bird Circle Clinic for Pediatric Neurology

Collaborative Care Center Directors:
Mariam Hull, MD
Joshua Cousin, MD

Primary Team Members

Mariam Hull, MD - Co-Director, Pediatric Movement Disorders
Joshua Cousin, MD - Co-Director, Pediatric Epilepsy/Ketogenic Diet
Lisa Emrick, MD - Neurogenetics, Neurodevelopment
Robert Betanecort - Social Worker
Madeleine Scullin, RN - Nurse Coordinator
Arturo Zaldana, RD - Dietician (Ketogenic Diet)
Kelly Dihn, RD - Dietitian (Ketogenic Diet)
Lauren Kronisch, RD - Dietician (Ketogenic Diet)

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

Wisconsin:

University of Wisconsin Hospital and Clinics
Department of Adult and Pediatric Neurology
600 Highland Avenue
Madison, WI 53792
United States

Clinic Name:
UW Health Department of Neurology

Collaborative Care Center Directors:
Elizabeth Felton, MD, PhD (Adult)
Kristin Seaborg, MD (Pediatric)

Primary Team Members

Elizabeth Felton, MD, PhD - Adult Neurologist and Epileptologist, Adult Neurology Ketogenic Diet Therapy Clinic
Kristin Seaborg, MD - Pediatric Neurologist, Pediatric Neurology Ketogenic Diet Therapy Clinic
Therese Ashkenase, DNP - Adult epilepsy APP
Salma Johnson, APNP - Pediatric epilepsy APP
Kelly Faltersack MS, RD, LDN, CD - Clinical Nutritionist, Adult Neurology Ketogenic Diet Therapy Clinic
Megan Grassl, MS, RDN, CNSC, CD - Clinical Nutritionist, Adult Neurology Ketogenic Diet Therapy Clinic
Abiel Wettstein, MS, RDN, CNSC, CD - Clinical Nutritionist, Adult Neurology Ketogenic Diet Therapy Clinic
Joanna Otis, MS, RDN, CNSC, CD - Clinical Nutritionist, Adult Neurology Ketogenic Diet Therapy Clinic
Allix Ice MS, RDN, CNSC, CD - Clinical Nutritionist, Adult Neurology Ketogenic Diet Therapy Clinic
Nora McCormick, RDN - Pediatric Dietitian, Pediatric Neurology Ketogenic Diet Therapy Clinic
Katherine Bybee, MS, RD, CD - Pediatric Clinical Dietitian, Pediatric Neurology Ketogenic Diet Therapy Clinic
Kamilee Conaway, RN - Pediatric RN, Pediatric Neurology Ketogenic Diet Clinic Coordinator
Hanna Christensen, PharmD, BCPPS - Pediatric Clinical Pharmacist
Lisa Hawk, PharmD - Epilepsy Pharmacist
Lauren Schleicher, PharmD - Epilepsy Pharmacist
Neurology Social Workers
Neurology RNs

Appointment Contact

New Patient Appointment Process

Referrals to the Adult or Pediatric Ketogenic Diet Clinic for individuals with confirmed GLUT1 deficiency can be made from a patient's primary care provider or primary neurologist.

Information about how to make a referral can be found on UW Health Website: https://www.uwhealth.org/refer-a-patient

If a referral for a pediatric patient with GLUT1DS is made, an email to pediatric keto RN Kamilee Conaway [email protected] or pediatric dietitian Nora McCormick RDN [email protected] should be sent to expedite the referral process.

If a referral for an adult individual with GLUT1DS is made, an email to adult clinical dietitian Kelly Faltersack MS, RD, LDN, CD should be sent to [email protected].

Once a referral is made and approved by the affected individual's insurance company, a member of the neurology clinic will reach out to the individual to schedule an appointment. A typical wait time to schedule an appointment is 2 - 6 months.

Age Range of Patients

Payment/Reimbursement Accepted

NORTH AMERICA

Canada

Ontario:

The Hospital for Sick Children
555 University Avenue
Toronto, ON M5G 1X8
Canada

Clinic Name:
Division of Neurology - Ketogenic Diet Clinic

Collaborative Care Center Directors:
Suvasini Sharma, MD, DM, FRCPCH
Carolina Gorodetsky, MD, MSc
Liali Aljouda, MD
Puneet Jain, MD, DM, CSCN

Primary Team Members

Ketogenic Diet Team:

Dr. Suvasini Sharma (Neurologist/ Epileptolgist)
Dr. Jeff Kobayashi (Neurologist)
Helen Lowe (Dietician)
Jolynn Dickson (Dietician)
Karen Owusu (NP)
Jenna Christiansen (RN)

Metabolics Medicine:

Dr. Liali Aljouda (Clinical and metabolic geneticist)

Movement Disorders Team:

Dr. Carolina Gorodetsky (Movement disorder specialist)
Andrea Leblanc-Miller (NP)
Amal Warsame (RN)

Epilepsy:

Dr. Elizabeth Donner (Epileptologist)
Dr. Puneet Jain (Epileptologist)

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

SOUTH AMERICA

Chile

Laboratorio de Genética y Enfermedades Metabolicas, Instituto de Nutrición y Tecnologia de los Alimentos (INTA), Universidad de Chile
avenida el libano 5524, MACUL
SANTIGO, SANTIAGO 7810000
Chile

Clinic Name:
Outpatient Care Center (CEDINTA), INTA, University of Chile

Collaborative Care Center Directors:
Dr. María Jesús Leal-Witt
Prof. Verónica Cornejo

Primary Team Members

Appointment Contact

New Patient Appointment Process

Patients with GLUT1 deficiency must be referred by a neurologist or treating physician, who will send them with a confirmed diagnosis of GLUT1 deficiency (biochemical and molecular studies, and neurological examination) to begin ketogenic diet therapy at INTA.

INTA has a Ministry-funded program that subsidizes keto formulas for all Chilean patients diagnosed with GLUT1 deficiency, and this subsidy is for life.

To enroll in the follow-up clinic, patients must sign a letter agreeing to maintain the nutritional treatment and frequent follow-up at INTA.

Follow-up appointments are conducted in person every 15 days initially and then monthly.

Appointments must be scheduled by calling CEDINTA at +56 9 29781466. Natalia Salazar. mail: [email protected]

Age Range of Patients

Payment/Reimbursement Accepted

EUROPE

Germany

Aschaffenburg Children's Hospital
Am Hasenkopf 1
Aschaffenburg
63739 Germany

Clinic Name:
Children's Hospital and Sozialpaediatrisches Zentrum

Collaborative Care Center Director:
Prof. Dr. med Jörg Klepper

Primary Team Members

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

Netherlands

Radboud University Medical Center
Geert Grooteplein
Zuid 10
6525GA
Netherlands

Clinic Name:
Amalia Children's Hospital (for children)
Department of Internal Medicine (for adults)

Collaborative Care Center Director:
Prof. Dr. Michél Willemsen

Primary Team Members

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

Norway

The National Centre for Epilepsy Norway
Oslo University Hospital
Pb 4950 Nydalen
0424 Oslo
Norway

Clinic Name:
The National Centre for Epilepsy

Collaborative Care Center Directors:
Ellen Molteberg, MD, PhD
Kathrine C. Haavardsholm, RD

Primary Team Members

Ellen Molteberg, MD, PhD - center director, medical specialist
Kathrine C. Haavardsholm, CD - center co-director, clinical dietitian
Anne Våtevik, MD - medical specialist
Sara Linn Saunes - clinical dietitian, ketogenic diet specialist
Magnhild Kverneland - clinical dietitian PhD, ketogenic diet specialist
Julie Fossum Strat - clinical dietitian, ketogenic diet specialist

Specialist nurses and other neurologists and paediatricians are also very important primary team members.

Appointment Contact

New Patient Appointment Process

Patients are to be referred by their medical doctor. The referral should include relevant medical records and test results.

Shortly, the patient will have an appointment with the ketogenic diet team in order to plan diet initiation.

In the event of a verified GLUT1 deficiency syndrome diagnosis, the ketogenic diet can usually be initiated within a few months, often much sooner (within days or weeks) for small children.

Currently the ketogenic diet team can only accept residents of Norway.

Age Range of Patients

Payment/Reimbursement Accepted

Spain

Sant Joan de Déu Hospital
Passeig Sant Joan de Déu, 2
Esplugues de Llobregat
Barcelona, Barcelona 08950
Spain

Clinic Name:
Metabolic Unit

Collaborative Care Center Directors:
Leticia Pías Peleteiro, MD
Angeles Garcia Cazorla, MD, PhD

Primary Team Members

Primary Team Members:

Neurology/Neurometabolic Team:
Angels Garcia Cazorla (coordinator)
Leticia Pías Peleteiro
María del Mar O'Callaghan
Alejandra Darling

Gastroenterology and Nutrition Team:
Natalia Egea
Maria Dolores Garcia Arenas
Silvia Meavilla Olivas
Camila Garcia Volpe
Mariela de los Santos Pelegrin

Biochemistry Team:
Rafael Artuch
Aida Ormazabal Herrero

Genetics Team:
Dèlia Yubero
Judith Armstrong

Collaborative Care Center (transition to adult hospital):
Hospital Clinic Barcelona
Natalia Julià

Appointment Contact

New Patient Appointment Process

Sant Joan de Déu Children Hospital provides treatment for patients with highly complex conditions for patients within Spain, and from all over the world.

Patients living within the Spanish territory can be referred for outpatient clinic following standard protocols within the Spanish public healthcare network.

International patients can be visited either requesting an online visit or in-person visit to the hospital.

https://www.sjdhospitalbarcelona.org/en/online-second-medical-opinion

https://www.sjdhospitalbarcelona.org/en/international-patients/request-treatment

Age Range of Patients

Payment/Reimbursement Accepted

Hospital Universitario Central de Asturias
Avenida de Roma s/n
Oviedo, Principado de Asturias 33O11
Spain

Clinic Name:
Pediatric Neurology Unit

Collaborative Care Center Director:
Ignacio Málaga Diéguez, MD, PhD

Primary Team Members

Ignacio Málaga MD, PhD - Head of the Pediatric Neurology Unit
Raquel Blanco-Lago MD, PhD - Child Neurologist
Antonio Hedrera MD, PhD - Child Neurologist
Nelly Alvarez-Alvarez MD - Child Neurologist
Borja Bernardo-Fernández MD - Child Neurologist
Alejandra Tamargo MD - Fellow in Child Neurology
Juan José Díaz Martin MD, PhD - Pediatric Gastroenterologist
Marta Suarez PhD- Pediatric nutritionist

Appointment Contact

New Patient Appointment Process

Age Range of Patients

Payment/Reimbursement Accepted

United Kingdom

Royal Manchester Children's Hospital
Oxford Road
Manchester, Greater Manchester M13 9WL
United Kingdom

Clinic Name:
Willink Unit

Collaborative Care Center Directors:
Bernd Schwahn, MD
Victoria Whiteley, RD