There are medical centers across the U.S. that offer multidisciplinary care for the treatment of Dravet syndrome. These facilities have a high concentration of expertise and related resources centered on Dravet syndrome, and they have a familiarity with this condition. They understand the diagnostic criteria of Dravet syndrome and the multiple needs and appropriate medical care for this disorder. Treatment is delivered in a comprehensive fashion, which offers many advantages for patients and providers. These centers are frequently involved in studies and/or clinical trials for Dravet syndrome and are knowledgeable about new treatments and cutting edge research.

Individuals with Dravet syndrome have complex and lifelong neurological and medical needs that are unique. Often, a local care team is not familiar with Dravet syndrome or may not have had another patient with this diagnosis. A visit to a specialty clinic will benefit the patient and family, allowing them to connect with knowledgeable experts and form a bridge to their local care provider when complex issues arise.

Medical professionals interested in having their center added may contact our Research Coordinator for details and criteria.

Disclaimer:  DSF does not endorse any particular care provider or center and provides this list only as a service to the community. Not all of the professionals and institutions listed on this site have the same treatment approach. Your decision to select a particular health care provider and/or treatment option is yours alone, and DSF bears no responsibility for the care provided by any professional listed on this site or for outcome of any treatment option you may select.

Dravet Comprehensive Care Centers

BOSTON CHILDREN’S HOSPITAL
300 Longwood Avenue
Boston, MA 02115
http://www.childrenshospital.org/

Clinic Lead:
Annapurna Poduri, MD, MPH
Director
Epilepsy Genetics Program

To make an appointment:
Contact Lisanna Paulino
(617) 919-8282
lisanna.paulino@childrens.harvard.edu

Services offered:

  • Pediatric neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
We have a team trained in epilepsy genetics, including neurologists trained in pediatric epilepsy, physical medicine and rehabilitation, and other pediatric subspecialists as above, physicians, genetic counselors who are expert in epilepsy genetics, a nurse practitioner with experience with Dravet syndrome, and a full-time nursing staff.

We meet weekly to review new referrals, evaluate patient variants, and triage visits. For one-time Dravet syndrome/epilepsy genetics visits, we schedule patients for 90 minutes with one of our epileptologists (Drs. Ann Poduri, Heather Olson, or Christelle Achkar) and genetic counselors (Beth Sheidley, Lacey Smith, Sonal Mahida).

For on-going epilepsy care, all of the physicians in the Division of Epilepsy are well versed in Dravet syndrome. In particular, Dr. Chellamani Harini and Dr. Ann Bergin, who runs our ketogenic diet program, are among those who follow many patients with Dravet syndrome. Our nurse practitioner Candice Marti has been actively following several of our patients and attends national DSF conferences to stay up to date on developments related to treatment of Dravet syndrome. We have been involved in clinical trials for Dravet syndrome through our Clinical Trials Study Unit.

THE CHILDREN’S HOSPITAL OF PHILADELPHIA
3401 Civic Center Boulevard
Philadelphia, PA 19104
https://www.chop.edu/centers-programs/epilepsy-neurogenetics-initiative-engin

Clinic Lead:
Eric Marsh, MD, PhD
Associate Professor of Neurology
Epilepsy Neurogenetics Initiative (ENGIN)

To make an appointment:
Contact Christina McGill
215-590-1719
ENGIN@email.chop.edu

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work

The Epilepsy Neurogenetics Initiative (ENGIN) at The Children’s Hospital of Philadelphia integrates genetic testing into the diagnosis and treatment of children with epilepsy, and provides access to expert multidisciplinary care for children with genetic epilepsy syndromes. We combine expert clinical management and advanced genetic testing with innovative research to identify the underlying cause of a child’s epilepsy and develop an individualized approach to treatment and management.

Children with Dravet syndrome and other SCN1A spectrum disorders who are cared for at CHOP will receive a comprehensive neurogenetic evaluation and genetic counseling session with an attending neurologist and genetic counselor who specialize in Dravet syndrome. Through ENGIN, children will be evaluated for: genetic confirmation; epilepsy management and formulation of a Dravet-specific seizure action plan; physical, occupational, and speech therapy evaluation; screening for cardiac issues; ophthalmological issues; gastrointestinal issues; and SUDEP discussion and risk reduction. Patients also have access to a full range of epilepsy therapies provided through CHOP’s Pediatric Epilepsy Program, including dietary treatment, epilepsy surgery, cutting edge research and clinical trials, and ongoing follow up care.

ENGIN team members are leaders in basic, translational, and clinical research investigating mechanisms of and novel therapies for Dravet syndrome. All individuals seen in the ENGIN Clinic are offered the opportunity to participate in our research studies.

CLEVELAND CLINIC  
9500 Euclid Avenue
Cleveland, OH 44195
https://my.clevelandclinic.org/departments/neurological/depts/epilepsy#overview-tab

Clinic Lead:
Ajay Gupta, MD
Head, Pediatric Epilepsy
https://my.clevelandclinic.org/departments/neurological/depts/epilepsy/pediatric-doctors

To make an appointment:
Penelope Hoytt, Intake Coordinator
216-445-0601
epilepsynursepeds@ccf.org

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Caregiver support services (i.e., monthly support group)
  • Other

Comprehensive Dravet Clinic at Cleveland Clinic

Cleveland Clinic offers a comprehensive epilepsy center to help children and adult for medical and surgical treatment of complex epilepsy conditions. They offer a Comprehensive Dravet Clinic that includes a full-time social work in Pediatric Epilepsy who helps provide support and resources to family being seen in out patient and inpatient. They also have full time neurobehavioral specialists to help facilitate complex neurological and behavioral treatment of children with epilepsy. They have a Pediatric Epilepsy Support Group, and have the resources via the organization and Cleveland Clinic Children’s to improve outreach and services for families with children with chronic conditions such as Dravet syndrome. Their program is unique as they have Pediatric and Adult services (of all specialties, including Neurological and epilepsy) under one umbrella organization making transition of complex epilepsy patients much more personal and easier. Their electronic medical records allows availability of all medical records, imaging and tests from newborn to adult years of the patient to allow high quality longitudinal care. Their comprehensive epilepsy center also offers specialty clinics for Tuberous Sclerosis, Epileptic Encephalopathies, and the Ketogenic Diet, as well as expertise in epilepsy surgery.

CHILDREN’S HOSPITAL COLORADO
13123 E 16th Ave
Box 155
Aurora, CO 80045
https://www.childrenscolorado.org/

Clinic Lead:
Kelly Knupp, MD
Associate Professor of Pediatrics and Neurology
Pediatric Neurology

To make an appointment:
Call 720-777-6895*
*Families should identify they have a child with Dravet syndrome when they call for an appointment to ensure they are scheduled properly.

Services offered:

  • Pediatric neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work

Caregiver support is available through the Epilepsy Foundation of Colorado. We also encourage families to reach out to the Dravet Syndrome Foundation. Many families living with Dravet syndrome reside in the Colorado and the surrounding states and have been able to connect and provide family support through DSF.

COOK CHILDREN’S MEDICAL CENTER
Jane and John Justin Neurosciences Center
1500 Cooper St, 4th Floor
Ft Worth, TX 76104
https://cookchildrens.org/neurology/Pages/default.aspx

Clinic Lead:
M. Scott Perry, MD
Genetic Epilepsy Clinic
Medical Director, Neurology; Co-Director, Jane and John Justin Neurosciences Center

To make an appointment:
Contact Amy Davis, Epilepsy Program Coordinator
682-885-7259
682-885-2500

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Caregiver support services
    • Epilepsy support group meetings (on average, every 2 months)
    • Sibs2Sib program for siblings of children with chronic medical conditions

Starting June 2019, Cook will offer an Adult Transition Genetic Epilepsy Clinic staffed by an adult epileptologist and pediatric epileptologist to ensure efficient transition of care to an adult epileptologist familiar with the care of Dravet syndrome.

HELEN DEVOS CHILDREN’S HOSPITAL
35 Michigan St., Suite 3003
Grand Rapids, MI 49503
https://www.spectrumhealth.org/patient-care/childrens-health/neurosciences

Clinic Lead:
Seth Devries, MD
Director, Epilepsy Genetic Clinic

To make an appointment:
Contact the Neurosciences Division
616-267-2500

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Caregiver support services
    • Child Life Specialist
    • Quarterly Support Group Meetings

LE BONHEUR CHILDREN’S HOSPITAL
Pediatric Neurology
848 Adams Street, L400
Memphis, TN 38103
https://www.lebonheur.org

Clinic Lead:
James Wheless, BScPharm, MD, FAAP, FACP, FAAN, FAES
Professor & Chief of Pediatric Neurology, Le Bonheur Chair in Pediatric Neurology; Director, Le Bonheur Comprehensive Epilepsy Program & Neuroscience Institute

To make an appointment:
Contact Lauren Siebrase-Wilkes, NP
901-287-5060
laurensiebrase@lebonheur.org

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work

Le Bonheur is active in clinical research trials in multiple treatment areas, and in other disease aspects. They also encourage patients to communicate and establish a relationship with the Dravet Syndrome Foundation and attempt to place patients in touch with other patients in their geographic area.

ANN & ROBERT H. LURIE CHILDREN’S HOSPITAL OF CHICAGO
225 E. Chicago Ave., Box 29
Chicago, Illinois 60611
https://www.luriechildrens.org/

Clinic Lead:
Linda Laux, MD
Dravet Clinic

To make an appointment:
Contact the Epilepsy Center
312-227-3540

Services offered:

  • Pediatric neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work

  PROGRAM DETAILS COMING SOON

MAYO CLINIC
200 First St SW
Rochester, MN 55905
https://www.mayoclinic.org/

Clinic Lead:
Elaine Wirrell, MD
Director of Pediatric Epilepsy
Pediatric Epilepsy Clinic

To make an appointment:
Call Nicole Fay
507-284-9974

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Transition clinic for Dravet patients transferring to adult services
  • Access to clinic trials

NEW YORK PRESBYTERIAN HOSPITAL – WEILL CORNELL MEDICAL COLLEGE
1320 York Avenue, Ste 605
New York, NY 10021
https://www.weillcornell.org/

Clinic Lead:
Srishti Nangia, MD
Director

To make an appointment:
Contact Nisia Nedd; Department of Child Neurology
212-746-3278

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Caregiver support services (i.e., monthly support group)

Families benefit from a team of specialists and subspecialists, who are dedicated to providing excellent multidisciplinary and compassionate care. There is a psychologist available for families to offer support. Families are offered support via telehealth appointments or in-person office visits. Their psychiatry department also offer support to families by providing educational webinars and support groups. They also refer families to the following resources:

IncludeNYC
https://includenyc.org/
They have a hotline in English and Spanish and families can call to get connected to support resources
English: 212-677-4660
Spanish: 212-677-4668

YAI
https://www.yai.org/
Families can call 212-273-6182 or email link@yai.org to get connected to services

AHRC NYC
https://www.ahrcnyc.org/
212-780-4491

NICKLAUS CHILDREN’S HOSPITAL
3200 SW 60th CT
Suite 302 – Neurology
Miami, FL 33155
https://www.nicklauschildrens.org/

Clinic Lead:
Ian Miller, MD
Director
Nicklaus Children’s Hospital – Ion Channel Epilepsy Clinic

To make an appointment:
Contact Gabriela Martinez
786-624-2381
Gabriela.Martinez@nicklaushealth.org

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Caregiver support services
    • Parent clinic ambassador
    • Advocacy with Epilepsy Florida
    • Help with IEPs and school forms
    • Summer camp
    • Parent Child Interaction Therapy referral
    • Behavioral therapies and services referrals

NYU COMPREHENSIVE EPILEPSY CENTER
223 East 34th St
New York, NY 10016
https://nyulangone.org/locations/comprehensive-epilepsy-center

Clinic Lead:
Judith Bluvstein, MD
Director, Dravet Clinic

The NYU Comprehensive Epilepsy Center is actively involved in several medication research studies.

To make an appointment:
Contact Samantha Stanhope
646-558-0808

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work
  • Caregiver support services
    • The Parent Network, FACES organization
    • Annual epilepsy conference for parents and caregivers
    • Lodging grants for out-of-state patients, through FACES
    • Summer Camp scholarship program, through FACES

RAINBOW BABIES AND CHILDREN’S HOSPITAL
11100 Euclid Ave
Cleveland, OH 44106
https://www.uhhospitals.org/rainbow/services/pediatric-neurology

Clinic Lead:
Asim Shahid, MD
Division Chief Pediatric Neurology and Epilepsy

To make an appointment:
Pediatric Epilepsu
216-286-6644

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work

Involved in ongoing clinical trials, with participation potential in future Dravet syndrome related clinical trials.

SEATTLE CHILDREN’S HOSPITAL
4800 Sand Point Way NE
Seattle, WA  98105
https://www.seattlechildrens.org

Clinic Lead:
Russell Saneto, DO, PhD
Professor, Neurology and Adjunct Professor Pediatrics

To make an appointment:
Dial 206-987-2078 (Neurology)
Select Option 1

Services offered:

  • Pediatric neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist
  • Social work

ST. LOUIS CHILDREN’S HOSPITAL / WASHINGTON UNIVERSITY SCHOOL OF MEDICINE
660 South Euclid
St. Louis, MO 63110
https://www.stlouischildrens.org

Clinic Lead:
Mary Bertrand, MD
Associate Professor of Neurology and Pediatrics

To make an appointment:
Pedatric Neurology
800-678-5437

Services offered:

  • Pediatric neurologist/epileptologist
  • Adult neurologist/epileptologist
  • Genetic counselor
  • Pediatrician
  • Cardiologist
  • Orthopedics
  • Gastroenterologist
  • Endocrinologist
  • Pulmonologist
  • Sleep specialist
  • Metabolic specialist
  • Developmental or neuro- psychologist
  • Dietician
  • Keto clinic
  • Speech pathologist/therapist
  • Occupational therapist
  • Physical therapist

They have epilepsy neurosurgery support and can offer Dravet patients vagal nerve stimulator (VNS) insertion, as well as corpus callosotomy.

UNIVERSITY OF CALIFORNIA SAN FRANCISCO
1825 4th Street, 5th Floor
San Francisco, CA 94143
https://www.ucsfbenioffchildrens.org/clinics/epilepsy/

Clinic Lead:
Joseph Sullivan, MD
Director, Pediatric Epilepsy Center of Excellence (PECE)

To make an appointment:
Contact Leila Marks-Block
415-353-9064
Leila.Marks-Block@ucsf.edu

Services offered:

    • Pediatric neurologist/epileptologist
    • Adult neurologist/epileptologist
    • Pediatrician
    • Cardiologist
    • Orthopedics
    • Gastroenterologist
    • Endocrinologist
    • Pulmonologist
    • Sleep specialist
    • Metabolic specialist
    • Developmental or neuro- psychologist
    • Dietician
    • Keto clinic
    • Social work
    • Caregiver support services (i.e., monthly support group)

We have just started a bi-monthly webinar based support group run by an LCSW and parent of a child with Dravet syndrome.
We have been involved in clinical trials for Dravet syndrome.

If there is not a center located near you, you can look for medical professionals across the U.S. who treat and have familiarity with Dravet syndrome at the link below.

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