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.

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
3500 Civic Center Boulevard
Philadelphia, PA 19104
www.chop.edu/centers-programs/division-neurology

Clinic Lead:
Eric Marsh, MD
Associate Professor
Neurogenetics Clinic

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

Services offered:

  • Pediatric neurologist/epileptologist
  • Genetic counselor
  • Occupational therapist
  • Physical therapist

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.

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

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
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

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.

Find A Doctor