TSC Clinics
The TSC Alliance supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients.
The TSC Alliance has offered TSC Clinic designations to the institutions listed below in order to help serve as a resource for the TSC community to identify where comprehensive clinical care for people with TSC is available.
In order to qualify as TSC Clinic or TSC Center of Excellence, a clinic must follow established TSC clinical consensus (treatment) guidelines developed by an international group of clinical experts, many of whom are members of the TSC Alliance Professional Advisory Board. The TSC clinical consensus guidelines consist of a series of objective metrics that help measure a clinic’s commitment to TSC care, the availability of particular medical specialties relevant to TSC, the availability of particular educational resources and whether or not a clinic participates in clinical trials.
The TSC Alliance does not accredit any TSC Clinic or TSC Center of Excellence, and the TSC Alliance does not directly provide or guide any clinical care or medical decision-making. None of the information provided by TSC Alliance, including the identification of TSC Clinics or TSC Centers of Excellence, is intended as medical advice and should not be relied upon as a substitute for professional consultation with a qualified healthcare provider familiar with a patient’s medical needs. The identification of a TSC Clinic or Center of Excellence does not constitute a recommendation or endorsement of any provider of medical care.
If you or your child with TSC needs an appointment at a clinic for the first time, you might be transferred to a call center to register for a medical record number (MRN) before you are able to schedule an appointment at the TSC clinic. When you call the listed number for clinic information, please be sure to tell them you or your child has TSC, then specify you want to make an appointment with the doctor who is listed as the Director/Co-Director. Questions about clinic services, billing and insurance should be directed to the TSC clinic staff.
Disclaimer: The information about the TSC Clinics and Centers of Excellence may change between annual updates. Please email clinicconcerns@tscalliance.org or call (240) 463-7250 to report any problems you encounter with the contact information posted below.
Current Standards for TSC Clinics and TSC Centers of Excellence
The TSC Alliance is in the process of phasing in new TSC Clinic Standards.
- Scope of Relationship Policy
- TSC Clinic Structure and Expertise Requirements
- Standard of Care Metrics
Questions? Contact Ashley Pounders at apounders@tscalliance.org.
TSC Clinic Experience of Care Survey
The TSC Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Your comments in this online survey will be shared with the TSC Clinic Director and staff. The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you. We invite you to complete this survey any time after you’ve been to the TSC Clinic. If you have any questions, contact Ashley Pounders at apounders@tscalliance.org.
The TSC Alliance TSC Clinic Ambassador Program
A TSC Clinic Ambassador:
- Is a volunteer, usually an adult with TSC or a parent of a child with TSC, who expresses interest in serving in this role and is a good fit with the clinic.
- Provides emotional support to newly diagnosed people with TSC and their families.
- Helps a parent/caregiver navigate through the specialists crucial to their loved one’s care.
- Provides information about local and regional resources.
- Informs and updates people with TSC and their families about the TSC Alliance and in their community.
To view full information about each TSC Clinic, please scroll down or click on the map below:
All information listed in the map is also repeated below. Click one of the following letters to be directed to the corresponding state name.
A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z | International
ALABAMA
Birmingham
University of Alabama Birmingham Tuberous Sclerosis Clinic
Co-Directors: E. Martina Bebin, MD, MPA and Bruce Korf, MD, PhD
Coordinator: Jessica Krefting, BSN, RN
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
Out-of-State Medicaid Policy: Some states are accepted; please contact the clinic for current policy.
For more information about the UAB TS Clinic and to schedule an appointment, contact Jessica Krefting, BSN, RN at (205) 934-4983.
ARIZONA
Phoenix
APNNA – Arizona Pediatric Neurology & Neurogenetics Associates
Located at 3330 N. 2nd Street, Suite 402, Phoenix, AZ 85012
Director: Vinodh Narayanan, MD
Administrative Coordinator: Chitra J. Narayanan
Range Seen: Children and adults
TSC Clinic Frequency: As needed.
For more information or to schedule an appointment, please call (602) 687-8555 or email info@azpediatricneurology.com.
ARKANSAS
Little Rock
TSC Clinic at Arkansas Children’s
Director: Debopam Samanta, MD
Coordinator: Anna Bevis, RN
Age Range Seen: New patients up to age 21 years
Clinic Frequency: Monthly
For more information or to schedule an appointment call (501) 361-2501.
CALIFORNIA
Loma Linda
The Tuberous Sclerosis Clinic at Loma Linda University Health Care
Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408
Director: Stephen Ashwal, MD
Coordinator: Maha Issa-Koteira
Age Range Seen: Children and Adults
Clinic Frequency: Every first Thursday of the month
For more information or to schedule an appointment call (909) 835-1810. This is the phone number for the pediatric neurology specialty clinic, which includes TSC. Inform the scheduler that you are calling to make an appointment to see Dr. Ashwal.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Los Angeles
Children’s Hospital Los Angeles Tuberous Sclerosis Clinic
Director: Vijay Vishwanath, MD, PhD
Co-Director: Tena Rosser, MD
Coordinator: Katie Wanninger, RN, BSN
Age Range Seen: New patients under age 18 years
Clinic Frequency: Monthly
For Clinic Information and to schedule an appointment call (323) 361-2471.
Los Angeles
TSC Center of Excellence at UCLA
Director: Rajsekar (Raj) Rajaraman, MD
Administrative Coordinator: Anais Ruiz ajruiz@mednet.ucla.edu
Clinic Ambassador: Tara Palage tara.palage@yahoo.com
Age Range Seen: Children and Adults
Clinic Frequency: Weekly on Thursdays
Out-of-State Medicaid Policy: Requires one-time agreement with UCLA.
To schedule an appointment or for information on how to get a new patient referred to the TSC clinic please call (310) 825-0867 or email uclatsc@mednet.ucla.edu
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Oakland
UCSF Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic
Director: Ali Mostajelean, MD
Administrative Coordinator: Mariana Villagran
Age Range Seen: Children
Clinic Frequency: Weekly
To schedule an appointment, contact Mariana Villagran at (510) 428-3885 ext. 4543.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Orange
Children’s Hospital of Orange County TSC Clinic
Director: Donald Phillips, MD, MPH
Co-Director: Clare Skora, MD
Coordinator: Melissa Pajarito, RN
Age Range Seen: Children and young adults up to age 21 years
Clinic Frequency: Monthly
To schedule an appointment or for more information, contact (714) 671-8469.
San Diego
TSC Multidisciplinary Clinic at Rady Children’s Hospital San Diego
Director: Anuja Jindal, MD, MPH
Coordinator: Marsha Harp, RN
Age Range Seen: Children and Adults
Clinic Frequency: Monthly every third Thursday
To schedule an appointment, call (858) 966-5819.
Stanford
Northern California TSC Clinic at Lucile Packard Children’s Hospital
Stanford Hospital and Clinics
Director: Brenda E. Porter, MD, PhD
Co-Director: Scheherazade Le, MD
Coordinator: Perla Bautista Muench, RN, BSN (Pediatric)
Coordinator: Mimi Callanan, RN, MSN (Adults)
Clinic Ambassador: Bridget Britt, bridget.walsh216@gmail.com
Age Range Seen: Children will be seen by Dr. Porter at Lucile Packard Children’s Hospital. Adults will be seen by Dr. Scheherazade Le at Stanford Hospital & Clinic located at 300 Pasteur Drive, Third Floor, Room A301. Dr. Porter and Dr. Le who are specialists in neurology and epilepsy will refer patients to the appropriate specialists for evaluation and management of other issues related to TSC, as needed.
Clinic Frequency: Weekly.
For Appointments and Clinic Location: If you are a parent of a child 17 years or younger call (650) 723-0993. If you are an adult with TSC or parent of a dependent adult with TSC, call (650) 498-7551 for New Patient Appointments to be seen by Dr. Scheherazade Le.
Esta clínica cuenta con un doctor o un empleado que habla un poco de español (Dr. Le).
COLORADO
Denver
TSC Clinic at Children’s Hospital Colorado & University of Colorado (Adult Program)
Director: Susan Koh, MD at Children’s Hospital
Co-Director: Jaehyung Lim, MD at Children’s Hospital
Co-Director: Samuel DeStefano, MD at University Hospital
Coordinator (pediatric): Wynne Bird, BSN, RN, CPN at Children’s Hospital
Coordinator (adult): Kelly Barrow at University Hospital
Clinic Ambassador: Dana Holinka, emme01@msn.com
Age Range Seen: Children and Adults*
Clinic Frequency: Monthly, pediatric multidisciplinary TSC program^ meets first Friday and the adult multidisciplinary TSC program meets first Tuesday AM.
Out-of-State Medicaid Policy: No restrictions.
To schedule an appointment for your child at the Children’s Hospital, please call (720) 777-6895. To schedule an appointment at the Adult TSC Clinic, call (720) 848-9243.
*Adults with TSC and seizures. Adults who need other specialty care outside of epilepsy/neurology will be referred to other subspecialties with TSC expertise such as dermatology, genetics, urology, or pulmonology.
^Due to overwhelming interest in our monthly multidisciplinary TSC program, we are now offering patients the opportunity to schedule with all the necessary subspecialists in individual clinics within a short time frame, possibly same-day. This option minimizes wait times and gives patients all the same care and treatment as the Multidisciplinary Clinic. Please reach out to the Tuberous Sclerosis Complex Program clinic director or coordinator with any questions or concerns at (720) 777-6895.
CONNECTICUT
Farmington
TSC Clinic at Connecticut Children’s Medical Center
Director: Francis DiMario, Jr., MD, MA
Coordinator: Samantha Witham, BSN, RN, CPN
Age Range Seen: New patients up to age 25 years old.
Clinic Frequency: Weekly, half-day on Tuesday and half-day first Wednesday of each month.
To schedule an appointment, call (860) 837-7500.
Esta clínica cuenta con un doctor o un empleado que habla un poco de español.
DELAWARE
Wilmington
TSC Clinic at Nemours/duPont Hospital for Children
Director: Lily Tran, MD, FACNS
Co-Director: Ana Melikishvili, MD
Co-Director: Judith Adelizzi-Delaney, DNP, APRN
Coordinator: Lisa Vala, RN, BSN, REEGT
Age Range Seen: Children
Clinic Frequency: Weekly, every Thursday afternoon.
For clinic information contact Lisa Vala at lisa.vala@nemours.org. To schedule an appointment, call the scheduling secretary at (302) 651-5930.
DISTRICT OF COLUMBIA AREA
Washington, DC
Tuberous Sclerosis Clinic at Children’s National
Director: William McClintock, MD
Co-Director: Susanne Yoon, MD
Coordinator: Nancy Elling, RN, BSN, CPN
Clinic Ambassador: Kathi Dills kteach599@msn.com
Age Range Seen: Children and Adults.
Clinic Frequency: Weekly on Thursday at Children’s National Medical Center in Washington DC and monthly on the second Monday at the Regional Outpatient Center in Fairfax, VA.
For information about the TSC Clinic contact Nancy J. Elling, RN, BSN, CPN at (703) 635-2873. To schedule an appointment, call the Neurology appointment line at (202) 476-3611
FLORIDA
Gainesville
The UF Health Tuberous Sclerosis Center
Director: Hans Shuhaiber, MD
Co-Director: S. Parrish Winesett, MD
Co-Director: Sotiris G. Mitropanopoulos, MD
Coordinator: Kenya McHome, MSN
Age Range Seen: Children and Adults
Clinic Frequency: Monthly
For information and to schedule an appointment, call (352) 294-5000.
Miami
TSC Clinic at Nicklaus Children’s Hospital Miami
Director: Paula Schleifer, MD
Coordinator: Maria del Pilar Gennaro, MSN, ARNP, CNRN
Age Range Seen: Children and Young Adults up to age 25 years old
Clinic Frequency: Monthly on third Tuesday.
Out-of-State Medicaid Policy: Does not accept for outpatient visits. A letter of agreement is required prior to inpatient admissions.
To schedule an appointment, call (786) 624-3552.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Orlando
Advent Health Medical Group Epilepsy at Orlando
Director: Ki Hyeong Lee, MD, MBA
Co-Director: Julia Henry, MD
Age Range Seen: Children and Adults
Clinic Frequency: Weekly on Mondays and Tuesdays
For more information or to schedule an appointment, contact appointment scheduling at (407) 303-8127.
Orlando
Orlando Health Arnold Palmer Hospital for Children
Director: Vikram Prakash, MBBS, MD
Co-Director: Ana Aguilar-Bonilla, MD
Coordinator: Jennifer Graham, RN
Age Range Seen: Children up to age 21 years old
Clinic Frequency: Monthly
For clinic information and to schedule an appointment please contact our team at 321-842-6671 or r-aphtsclinic@orlandohealth.com.
St. Petersburg
Neurocutaneous Disorders Clinic at Johns Hopkins All Children’s Hospital
Director: Stacie Stapleton, MD
Co-Director: Melissa Crenshaw, MD
Coordinator: Sonja Steinbrueck, RN
Age Range Seen: New patients up to age 21 years.
Clinic Frequency: Monthly, second and fourth Mondays.
For Clinic Information and to schedule an appointment call (727) 767-3675.
Tampa
H. Lee Moffitt Cancer Center
Director: Sepideh Mokhtari, MD
Coordinator: None
Age Range Seen: Adults only.
Clinic Frequency: Monthly, every third Tuesday (subject to change).
For Clinic Information call (813) 745-3980 and to schedule an appointment call (813) 745-4251.
GEORGIA
Atlanta
Children’s Healthcare of Atlanta
Located at Center for Advanced Pediatrics, 1400 Tullie Road NE, 6th Floor, Atlanta, GA 30329
Director: David S. Wolf, MD, PhD
Co-Director: Prabhu Patil, MD
Coordinator: Nancy Morris, LPN
Clinic Ambassadors: Reiko Donato donator@bellsouth.net
Age Range Seen: Children and young adults up to age 21 years old.
TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible.
For information about the clinic call Nancy Morris at (404) 785-3679. To schedule an appointment call (404) 785-5437.
ILLINOIS
Chicago
University of Chicago Medical Center
Director: James H. Tonsgard, MD
Coordinator: Debbie Ruckman, RN, BSN, CPN, Telephone: 773-834-1927
Age Range Seen: Children and Adults
Clinic Frequency: One Friday afternoon per month and as needed weekly at main campus or off site locations.
Out-of-state Medicaid: Process to get approval may take several weeks. Contact clinic for details.
For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Chicago
Multidisciplinary Tuberous Sclerosis Clinic at Ann & Robert H. Lurie Children’s Hospital of Chicago
Director: Priyamvada Tatachar, MD
Co-Director: Joyce Y. Wu, MD
Administrative Coordinator: Clara Samaniego
Coordinator: Kelly B. Nelson, RN
Age Range Seen: Children and young adults up to age 21 years old
Clinic Frequency: Twice monthly on selected Tuesday afternoons.
To schedule an appointment call (312) 227-3540.
Chicago
TSC Clinic at University of Illinois at Chicago
Director: Akira Yoshii, MD, PhD
Co-Director: Saba Ahmad, MD
Coordinator: Joyce Masterton, ANP
Age Range Seen: Children and Adults*.
Clinic Frequency: Monthly, every first Wednesday morning (subject to change).
For clinic information and to schedule an appointment, call (312) 996-7865. To avoid confusion with scheduling please specify you or your child has TSC. For children with TSC, schedule an appointment with Dr. Yoshii or Dr. Ahmad. *For adults with TSC, schedule an appointment with Dr. Jeffrey Loeb.
IOWA
Iowa City
University of Iowa Hospital & Clinics
Director: Michael Ciliberto, MD
Co-Director: Lyndsay Harshman, MD
Co-Director: Alpa Sidhu, MBBS, PhD
Co-Coordinators: Liberty Taeger and Lauren Siebrase-Wilkes, MSN, FNP-C
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
For information and to schedule an appointment, call 1-888-573-5437.
KENTUCKY
Louisville
TSC Clinic at Novak Center/University of Louisville
Director: Samir R. Karia, MD
Co-Director: Siddarth Shah, MD
Coordinator: Jessica (“Jess”) Sorrell, RN, BSN
Age Range Seen: Children and young adults up to age 21 years.
Clinic Frequency: Monthly. Every 4th Thursday afternoon.
For Clinic Information contact Lindsey Rose, LPN at (502) 588-3650, extension 50212. To schedule an appointment call Susan Dewitt at (502) 588-3650, extension 50032.
MARYLAND
Baltimore
TSC Clinic at Kennedy Krieger Institute
Director: Ryan Gill, MD
Coordinator: Lauren Hargis
Administrative Coordinator: Dallas Matthews
Age Range Seen: Children and young adults up to age 21 years.
Clinic Frequency: Twice monthly on Fridays, and as needed.
For information and to schedule an appointment, call (443) 923-2746 or email TSC@kennedykrieger.org.
Baltimore
University of Maryland
Director: Peter B. Crino, MD, PhD
Coordinator: Dana Bridges, MSN, FNP-BC
Clinic Ambassador: Jocelyn Cenna, portvue@comcast.net
Age Range Seen: New patients 12 years and older.
Clinic Frequency: Weekly.
To schedule an appointment call (410) 328-3574. For clinic information and non-urgent inquiries please call the Clinic Coordinator at (410) 448-2485.
Bethesda
Mid-Atlantic Epilepsy and Sleep Center
Director: Pavel Klein, MD
Co-Director: Amanda Pong, MD, MSc
Coordinator: Sheila Barton, RN
Age Range Seen: Children and Adults
Clinic Frequency: To be determined.
For information and to schedule an appointment, call (301) 530-9744.
MASSACHUSETTS
Boston
The Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital
Director: Elizabeth Thiele, MD, PhD
Coordinator: Erin Fonseca
Age Range Seen: Children and Adults
Clinic Frequency: Weekly on Fridays and every other Tuesday, as well as on an as needed basis.
To schedule an appointment please call (617) 726-6540.
Boston
Multi-Disciplinary Tuberous Sclerosis Program
Boston Children’s Hospital
Director: Mustafa Sahin, MD, PhD
Coordinator: Jennifer McCrave, RN, BSN, CNRN
Age Range Seen: Children and Young Adults up to age 25 years old
Clinic Frequency: Every other week.
Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont.
To schedule an appointment please call one of our Patient Experience Representatives at (617) 355-2711. For clinic-related questions, please email Zoë Frazier, MS, CGC at zoe.frazier@childrens.harvard.edu
MICHIGAN
Detroit
TSC Clinic at Children’s Hospital of Michigan
Director: Aimee Luat, MD
Co-Director: Melissa Gregory, MD
Coordinator: Jamie MacDougall, RN, BSN, CPN
Age Range Seen: Children and young adults up to age 21 years old
Clinic Ambassador: Treasa Bolger-Dunlap, Mtbolger@comcast.net
Clinic Frequency: One half-day every second Monday of the month.
Out-of-State Medicaid Policy: Accepts any that will reimburse.
For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620.
Grand Rapids
TSC Clinic at Helen DeVos Children’s Hospital
Director: Robin Cook, MD, PhD
Coordinator: Raeann Moore, RN
Age Range Seen: Children and adults
Clinic Ambassador: Mary Jo Cardona, mjcardona11@gmail.com
Clinic Frequency: A multidisciplinary clinic is held every second Thursday of each month.
To schedule an appointment call the Helen DeVos Children’s Hospital Welcome Center at 616-267-2500. For Urgent Appointments contact Raeann Moore, RN at 616-267-2954.
Royal Oak
Beaumont Children’s TSC Clinic
Director: Danielle A. Nolan, MD
Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC
Coordinator: Rachel Eatman
Age Range Seen: Children and Adults
Clinic Frequency: First and third Friday every month.
For information or to schedule an appointment call (248) 551-3302.
MINNESOTA
Roseville
TSC Clinic Without Walls
Director: Doug Smith, MD
Co-Director: Julie Hanna, MD
Coordinator: Emily Peterson
Clinic Ambassador: Kari Ihle, kariihle77@gmail.com, (612) 281-5759
Age Range Seen: Children and Adults
Clinic Frequency: Pediatric patients are seen at two dedicated half-day clinics per month and adults are seen at one dedicated full day and one half day clinic per month. Flexible to meet patient needs.
For information and to schedule an appointment, call Lorna Justesen at (651) 241-5290.
MISSOURI
Kansas City
Tuberous Sclerosis Clinic at Children’s Mercy Hospital
Director: Mohammed Ilyas, MD
Co-Director: Laurel Willig, MD
Coordinator: Beth Shepard, BSN, RN
Age Range Seen: New patients up to age 21 years.
Clinic Frequency: Monthly, every fourth Thursday (subject to change).
For Clinic Information call (913) 696-8254 and to schedule an appointment call (913) 696-8950 (ext. 88032).
St. Louis
Cardinal Glennon Children’s Hospital, Saint Louis University School of Medicine
Director: Himanshu Kaulas, MD
Coordinator: Stacey Hesse, RN
Age Range Seen: New patients up to age 20 years.
Clinic Frequency: Monthly, every second Thursday.
For Clinic Information and to schedule an appointment call (314) 268-2737.
St. Louis
Washington University Tuberous Sclerosis Clinic
Co-Director: Michael Wong, MD, PhD
Co-Director: Fabio Nascimento, MD
Age Range Seen: Children (0-17) and adults (18+)
Pediatric Coordinator: Ashley Fasciola, RN, BSN
Pediatric Clinic Frequency: Weekly every Wednesday morning.
For pediatric information and to schedule an appointment call (314) 454-6120 and ask for Ashley.
Adult Coordinator: Patty Schaefer, RN
Adult Clinic Frequency: 2-3 times a month on Mondays
For adult care information and to schedule an appointment call 314-362-8731.
Out-of-State Medicaid Policy: Accepts Illinois only.
NEW JERSEY
Hackensack
TSC Clinic at Northeast Regional Epilepsy Group
Director: Eric Ségal, MD
Coordinator: Shannon Brophy, RN, MSN, ANP-BC
Age Range: Children and Adults
Clinic Frequency: Weekly
For more information and to schedule an appointment call (551) 497-5470.
Livingston
TSC Clinic at Institute of Neurology at St. Barnabas
Co-Director: Aliza Alter, MD (Pediatric)
Co-Director: Andy Rodriguez, MD (Adult)
Coordinator: Munazza Malik
Age Range Seen: Children and Adults
Clinic Frequency: Monthly
For clinic information and to schedule an appointment, please call (973) 322-7580.
NEW YORK
Bronx
Montefiore Medical Center
Director: Nagma Dalvi, MD
Administrative Coordinator: Erica Sierra
Physician Assistant: Sheri Escalante, PA-C
Age Range Seen: Children and young adults up to age 30 years.
Clinic Frequency: Monthly, the first Tuesday.
To schedule an appointment, call (718) 920-4378.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Hawthorne, Westchester, and Hudson Valley
Clinic Without Walls serving NYC, Westchester, Hudson Valley & Connecticut
Director: Steven Wolf, MD, FAES
Co-Director: Patricia E. McGoldrick, NP, MSN, MPA
Administrative Coordinator: Carmen Williams
Age Range Seen: Children and Adults
Clinic Frequency: Daily
To schedule an appointment, call (914) 768-3970.
New York City
TSC Center at the Columbia University Irving Medical Center/New York Presbyterian
Director: Cigdem I. Akman, MD, MHA
Co-Director: Elena Gonzalez, PNP, MSN
Coordinator: Elena Gonzalez, PNP, MSN
Age Range Seen: Children and Adults.
Clinic Frequency: Appointments are scheduled as needed.
To schedule an appointment, call the TSC Center at (212) 342-1036.
New York City
The TS Center at New York University Langone Medical Center
(The TSC clinic at New York University (NYU) operates out of the NYU Comprehensive Epilepsy Center)
Director: Josiane LaJoie, MD
Coordinator: TBN
Age Range Seen: Children and Adults
Clinic Frequency: Daily as Needed
For information about the TSC Clinic or to schedule an appointment call (646) 558-0808.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
NORTH CAROLINA
Chapel Hill
UNC Hospitals Child Neurology Clinic at Chapel Hill
Director: Jamie K. Capal, MD
Coordinator: Jennifer Harrell, RN
Age Range Seen: Children and Adults
Clinic Frequency and location: Children’s clinic- Fourth Friday afternoons (UNC Child Neurology Clinic at Carolina Pointe II in Chapel Hill); Adult clinic- First Thursday morning (UNC Adult Neurology Clinic at Meadowmont Village in Chapel Hill)
For Clinic Information and to schedule an appointment call (984) 974-4401.
TAND Clinic is held at the Carolina Institute for Developmental Disabilities in Carrboro, NC on Wednesday mornings. Please call or email Twyla Peoples to schedule an appointment (919-843-1529, twyla.peoples@cidd.unc.edu).
Charlotte
Atrium Healthcare TSC Clinic at Levine Children’s Hospital
Director: Katherine Van Poppel, MD
Co-Director: Chad Jacobsen, MD
Coordinator: Kari Privette, RN, BSN
Clinic Ambassador: Heather Morris, Heather.Morris@atriumhealth.org
Age Range Seen: Children and Adults
Clinic Frequency: Fourth Friday every other month as a multidisciplinary clinic.
For Clinic Information and to schedule an appointment call (704) 403-2786.
Durham
Duke University Medical Center
Director: Klaus Georg Erich Werner, MD, PhD
Co-Director: Alice Salter, MD
Coordinator: Susan Markle, BSN, RN
Clinic Ambassador: Lana Vidal, lana_kozlova@hotmail.com, (201) 565-7662
Age Range Seen: Children and Adults. Dr. Werner sees all ages, however adults with commercial insurance or Medicare who have mild cognitive (i.e. IQ is 70 or higher) or psychiatric issues and are able to complete neuropsychological testing may schedule an appointment with Andrew Liu, MD, MS. Dr. Liu has clinic weekly, Monday through Wednesday, with 5 new slots designated per month to see adults with TSC.
Clinic Frequency: Weekly
For TSC Clinic information and to schedule an appointment call Loretta Dunn at (919) 668-0477. To schedule an appointment with Dr. Liu call his coordinator, Crystal Ballard at (919) 660-3234.
Winston-Salem
Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic
Director: Mary T. Silvia, MD
Co-Director: Roy E. Strowd,III, MD
Co-Director: Jane Boggs, MD
Administrative Coordinator: Mary Jo Shirley
Age Range Seen: Children and Adults.
Clinic Frequency: Pediatrics–2-3 Thursdays a month, subject to change. Adults–Monthly, every third Thursday.
To schedule an appointment, call (336) 716-4101.
OHIO
Akron
TSC Clinic at Akron Children’s Hospital
Acting Director: Michael Kohrman, MD
Coordinator: Linn Thomson, LPN
Age Range Seen: New patients up to age 25 years.
Clinic Frequency: Monthly, every second or fourth Wednesday.
For Clinic Information and to schedule an appointment call (330) 543-8050.
Cincinnati
The Tuberous Sclerosis Clinic
Founding Director: David N. Franz, MD
Director: Darcy Krueger, MD, PhD
Co-Director: David Ritter, MD, PhD
Coordinator: Aaron Pyle
Age Range Seen: Children and Adults
Clinic Frequency: Weekly every Wednesday all year round
Out-of-state Medicaid: Accepts pending pre-authorization from the Medicaid provider. There are financial assistance programs for those living in Indiana: Dearborn county; Kentucky: Boone, Campbell and Kenton counties; and Ohio: Butler, Clermont, Hamilton and Warren counties. Ohio residents may qualify for the H-Cap program, which is for low income and based on federal poverty guidelines. For further questions regarding these programs contact Financial Services at (513) 636-0201.
For clinic information or to schedule an appointment call 513-636-4222 or email TSclinic@cchmc.org.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Cleveland
TSC Clinic at The Cleveland Clinic
Director: Ajay Gupta, MD, FAAP
Coordinator: Paula Klima, RN
Age Range: Children and Young Adults.
Clinic Frequency: Weekly on Wednesday. Scheduling is flexible to meet patients’ needs whenever possible.
For more information or to schedule an appointment, email tsc_care@ccf.org or call (216) 445-0601.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Cleveland
TSC Clinic at Rainbow Babies and Children’s Hospital, University Hospitals of Cleveland Medical Center
Director: Jennifer Waldron, DO
Coordinator: Adina Chirla, BSN, RN
Age Range Seen: Children and Adults
Clinic Frequency: Consistently every fifth Wednesday of the month. Four patients seen simultaneously by a group of six providers (epilepsy, neurology, cardiology, nephrology, psychiatry and psychology).
For clinic information and to schedule an appointment call (216) 286-6644.
Columbus
TSC Clinic at Nationwide Children’s Hospital
Director: Monica P. Islam, MD
Assistant Director: Stephanie Ahrens, DO
Coordinator: Alli Brougher Chaddock, BS, BSN, RN
Age Range: Children
Clinic Frequency: Twice monthly on Thursdays.
For more information about the clinic call (614) 722-4665 and to schedule an appointment call (614) 722-4625.
Dayton
TSC Clinic at Dayton Children’s Hospital
Director: Rajkumar Agarwal, MD
Co-Director: Marvin Miller, MD
Coordinator: Sarah MacDonald, RN, BSN, CPN
Age Range Seen: Children and young adults up to age 21 years.
Clinic Frequency: Second Monday every month – afternoon clinic.
For clinic information contact Sue Wolff at (937) 641-3800 and to schedule an appointment contact Sarah MacDonald RN, BSN, CPN at (937) 641-3497.
PENNSYLVANIA
Hershey
Penn State Health/Hershey Medical Center
Director: Sita Paudel, MD
Co-Director: Sunil Naik, MD
Co-Director: Vinita Acharya, MD
Coordinator: Stacey Miller, LPN
Age Range Seen: Children and Adults
Clinic Frequency: Third and fourth Wednesday every month – afternoon clinic.
For information and to schedule an appointment, call (717) 531-8790.
Philadelphia
The Hospital of the University of Pennsylvania (HUP) and Children’s Hospital of Philadelphia (CHOP)
Director: Katherine Nathanson, MD
Co-Director: Katherine Taub, MD
Coordinator: Maria Bonanni, MSN, CRNP and Megan Lawrence (administrative)
Age Range Seen: Children and Adults for general TSC care and genetics. Children under age 12 years old with neurological issues are referred to Children’s Hospital of Philadelphia (CHOP) for evaluation.
Clinic Frequency: Weekly
To schedule an appointment at HUP, call (215) 662-4740. For CHOP appointments, call (215) 590-1719.
Pittsburgh
Children’s Hospital of Pittsburgh TS Clinic
Director: Shelley Williams, MD
Coordinator: To be named
Age Range Seen: Children and young adults up to age 21 years old
Clinic Frequency: Monthly
To schedule an appointment, call (412) 692-5520.
SOUTH CAROLINA
Columbia
TSC Clinic at Prisma Health – Columbia SC
Director: Monica Cramer, DO, MPH
Coordinator: Michelle Sanders, LPN
Age Range Seen: Children and Adults
Clinic Frequency: Monthly, first Friday
For more information about the clinic contact Michelle Sanders at (803) 434-8333. To schedule an appointment contact Kalisha Moore at (803) 434-3572.
TENNESSEE
Memphis
Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital
Director: John J. Bissler, MD, FAAP, FASN
Co-Director: James W. Wheless, MD
Co-Director: Sarah Weatherspoon, MD
TAND Unit Director: Tanjala T. Gipson, MD
Coordinator: Kristy Jones
Clinic Ambassador: Brittany Schwaigert, bschwaigert@gmail.com or (901) 238-7665
Age Range: Children and adults
Clinic Frequency: Daily
Out-of-State Medicaid Policy: Accepts all that get to them.
For more information about the clinic call (901) 287-4547. To schedule an appointment call (901) 287-7491.
Nashville
The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt
Director: Robert Carson, MD, PhD
Coordinator: Jennifer Garafola, MSN, RN, CPN
Age Range: Up to age 21 years
Clinic Frequency: Bi-weekly, first and third Wednesday of the month.
Out-of-State Medicaid Policy: Accepts Alabama and Kentucky and evaluates others on a case-by-case basis.
For more information or to schedule an appointment, call (615) 936-5536.
TEXAS
Austin
Dell Children’s Hospital
Director: E. Steve Roach, MD
Co-Director: Kristen Arredondo, MD
Co-Director: Kristina Julich, MD
Coordinator: Mary Smith, RN
Clinic Ambassador: Sheryl Kubala, sheryl.kubala@gmail.com
Age Range Seen: Children and Adults*
*Adults will be seen for an initial diagnosis and ongoing care provided you have a primary care physician.
Clinic Frequency: Monthly, every second Thursday.
For information or to schedule an appointment call (512) 628-1855.
Dallas
Scottish Rite for Children
Director: Steven Sparagana, MD
Coordinator: Catherine Thompson
Clinic Ambassador: Tricia Bodner
Age Range Seen: Children only
Clinic Frequency: First Monday P.M., second Tuesday A.M., third and fifth Tuesdays P.M. every month.
Out-of-State Medicaid Policy: Does not accept any.
For more information or to schedule an appointment call (214) 559-7828 or email TSCclinic@tsrh.org.
Dallas
Children’s Medical Center of Dallas, The University of Texas Southwestern Medical Center
Director: Charuta Joshi, MBBS, FAES, CSCN(EEG)
Co-Director: Alison Dolce, MD
Coordinator: Jeremy Fields, MBA, BSN, RN
Age Range Seen: Children
Clinic Frequency: Monthly
For more information or to schedule an appointment call (214) 456-2768.
Ft. Worth
Cook Children’s Clinic for Tuberous Sclerosis Complex
Director: David Shahani, MD (Pediatric)
Co-Director: M. Scott Perry, MD
Co-Director: Hamid Kadiwala, MD (Adult)
Coordinator: Amy Davis, BSN, RN
Age Range: Children and Adults
Clinic Frequency: First Tuesday of each month.
For more information or to schedule an appointment call Amy Davis at (682) 885-2500.
Houston
University of Texas-Memorial Hermann TSC Center of Excellence
Clinic Location: University of Texas Professional Bldg., 6410 Fannin Street, Suite 500, Houston, Texas 77030
Director: Hope Northrup, MD
Co-Director: Mary Kay Koenig, MD
Coordinator: Claire Sartwell, RN, BSN
Age Range: Children and Adults
Clinic Frequency: Weekly on Mondays.
For more information about the TSC Clinic contact Claire Sartwell, RN, BSN at (713) 500-7149. To schedule an appointment call (713) 500-6367.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Houston
Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital
Affiliated with Texas Children’s Hospital, Baylor College of Medicine
Director: Rohini Coorg, MD
Co-Director: Surya Prasadarao Rednam, MD, MS
Coordinator: Heather Ausby, BHA, BSN, RN
Clinic Ambassador: Shalonda Alexander, Shalonda.alexander@yahoo.com, (512) 417-7329.
Age Range: Children
Clinic Frequency: Monthly, every third Wednesday.
For information or to schedule an appointment call (832) 822-5046.
UTAH
Salt Lake City
University of Utah TS Clinic
Director: Shanna Swartwood, MD
Co-Director: Vanina Taliercio, MD
Coordinator: Melissa Mower, DNP
Age Range Seen: Children and young adults up to age 21 years.
Clinic Frequency: Coordinated Clinic is third Friday of each month. The TSC sub-specialists also see TSC patients most days of the week.
To schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599.
VIRGINIA
Charlottesville
The University of Virginia (UVA) Tuberous Sclerosis Clinic
Co-Director: Erika Axeen, MD (Pediatrics)
Coordinator: Myra Johnson, RN, BSN
Age Range: Children and Adults
Clinic Frequency: Monthly
To schedule an appointment, call (434) 924-2706 and ask to speak to Caitlin Jenkins. For more information about the clinic call Brooke Henry, RN, BSN, at (434) 924-8672.
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.
Richmond
Virginia Commonwealth University (VCU) Health System
Director: Lawrence Morton, MD (pediatrics)
Co-Director: Victor Gonzalez-Montoya, MD (adults)
Coordinators: Melissa Branham, RN (pediatrics) and Laura Sutherland, RN (adults)
Age Range: Children and Adult.
Clinic Frequency: Monthly.
For Clinic Information and to schedule an appointment call (804) 828-2467 (Children) and (804) 828-9350 (adults).
WASHINGTON
Seattle
TSC Clinic at Seattle Children’s Hospital
Director: Stephanie Randle, MD, MS
Co-Director: Jason Hauptman, MD, PhD
Coordinator: Claire Kennedy
Clinic Ambassador: Rebecca Racenet, rebecca.racenet@gmail.com, (907) 357-5160
Age Range: New patients up to age 22 years.
Clinic Frequency: Monthly, second Tuesday and third Thursday.
For Clinic Information and to schedule an appointment call (206) 987-2016.
Seattle
Swedish Neuroscience Institute
Director: Marcio Sotero de Menezes, MD
Coordinator: Louise Morton
Age Range: Children and Adults
Clinic Frequency: Monday – Thursday from 1 – 4 p.m. (schedule subject to change)
For more information and to schedule an appointment, call (206) 215-1440; Fax (206) 215-1441. Adults with TSC please call (206) 320-3492 to schedule an appointment with Dr. Michael Doherty.
WISCONSIN
Milwaukee
The Neurofibromatosis and RASopathy Program at Children’s Hospital of Wisconsin
Director: Donald Basel, MD
Coordinator: Katie Knaebe, RN, BSN
Age Range: Children up to age 18 years
Clinic Frequency: Weekly
For Clinic Information call (414) 266-2935 and to schedule an appointment call (414) 266-3347.
CANADA
London, Ontario
London Health Sciences Centre TSC Network
339 Windermere Road, London, Ontario N6A 5A5
Director: Andrew House, MD
Coordinator: Andrew House, MD
Age Range Seen: Adults
Clinic Frequency: The local practice is to see patients as and when they come. Virtual options (videoconferencing, telephone) are available.
The TSCN is a consultative clinic for adult patients with TSC, made up of specialists from a number of disciplines. Our network includes Dr. Andrew House (nephrology); Drs. Ana Suller Marti, Michelle Lee Jones and Derek Debicki (neurology/epilepsy); Drs. Stephen Pautler and Patrick Luke (urology); Dr. Marco Mura (respirology); Dr. Wei Jing Loo (dermatology); Drs. Natalya Karp and Dervla Connaughton (genetics); Dr. Raymond Lee (dentistry). Referrals to any specialist in the TSCN provides an entry point to multidisciplinary care, while undifferentiated cases can be referred to Dr. House. We are happy to accept referrals for any adult with TSC, and also to ease transition from pediatric to adult follow up for children in their late teens. For Clinic Information and to schedule an appointment call (519) 663-3167.
Montreal, Quebec
CHU Sainte-Justine, University of Montreal
Director: Philippe Major, MD
Coordinator: Lucie Côté RN
Age Range Seen: Children only under age 18 years.
Clinic Frequency: Thursdays, every 2-3 weeks.
For Clinic Information and to schedule an appointment call (514) 345-6510.
Montreal, Quebec
TSC Adult Clinic at the Centre Hospitalier de l’Université de Montréal (CHUM)
Director: Mark Keezer, MDCM, PhD
Coordinator: Vanessa Léger, RN
Age Range: Adults
Clinic Frequency: Every second Thursday.
For Clinic Information and to schedule an appointment call (514) 890-8000 extension 26419.
Toronto, Ontario
Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children
Interim Director: Elizabeth Donner, MD
Co-Director: Maria Zak, MN, NP
Coordinator: Eugenia Law, RN
TSC Program Patient Navigator: Semira Kaul, RN
Age Range Seen: Children up to age 18 years
Clinic Frequency: One full Friday per month with additional clinics added as needed.
For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123.
Toronto, Ontario
Adult TSC Clinic at the University Health Network
Director: Raymond Kim, MD, PhD
Co-Director: Monika Madan, MD
Coordinator: Nicole Forster, MSc, CGC
Age Range Seen: Adults 18 years and older.
Clinic Frequency: Weekly on Wednesdays
For clinic information contact Nicole Forster at (416) 586-4800 extension 2734 and to schedule an appointment contact adultgenetics@uhn.ca or Tabinda Nazeer at (416) 586-4800 extension 5454.
INDIA
Hyderabad, Telangana
Butterflies Child Development Centre and Paediatric Specialty Clinics
Director: Pranathi Gutta, MBBS
Co-Director: Nanda Kishor Kumar Vuppali, MBBS, DCH, MRCPCH
Coordinator: Pranathi Gutta, MBBS
Age Range Seen: Children only under age 18 years, with some flexibility to age 21 years.
Clinic Frequency: The local practice is to see patients as and when they come.
For Clinic information and to schedule an appointment call +91 95-50876540
Mumbai, Maharashtra
SRCC Children’s Hospital by NH
Director: Pradnya Gadgil, MBBS, MRCPCH
Coordinator: Ms. Kavita Singh
Age Range Seen: New patients only under 18 years age
Clinic Frequency: Daily as needed
For Clinic Information call +917304443098. To schedule an appointment call +91- 22-71222777 or +91 8291903140
Patparganj, Delhi
MAX Super Specialty Hospital- Patparganj
Director: Saurabh S. Chopra, MD
Coordinator: Ms. Nisha Sindra
Age Range Seen: New patients under age 16 years
Clinic Frequency: Clinic practice is to see patients as they come.
For Clinic information and to schedule an appointment call +91 11-43033333
ISRAEL
Be’er Shiva
The Clinic for Multidisciplinary Treatment of TS at Soroka University Medical Center
Director: Iris Noyman, MD
Age Range Seen: Children and Adults
Clinic Frequency: Every 4 to 8 weeks. Patients see Dr. Noyman on a more frequent basis.
For clinic information contact Dr. Noyman at irisn@clalit.org.il or 972-8-6400140. To schedule an appointment contact Sabrina Dekel at SabrinaDe@clalit.org.il or 972-8-6245469.
Jerusalem
Hadassah TSC Clinic
Director: Tal Giboa, MD
Co-Director: Oded Volovelsky, MD, PhD
Clinic Receptionist: Moran Avraham
Age Range Seen: Children and Adults
Clinic Frequency: Monthly, the last Tuesday of the month
For more information or to schedule an appointment, call 972-2-6779375.
Tel Hashomer
TSC Clinic at Sheba Medical Center
Director: Michal Tzadok, MD
Coordinator: Michal Leithner Sanigou
Age Range Seen: Children and adults
Clinic Frequency: Every first and third Sunday
For more information or to schedule an appointment, call 972-3-5302687 or email Michal.LeitnerSanigou@sheba.health.gov.il.
MEXICO
Merida, Yucatan
TSC Clinic at Neural Clinic Mexico
Director: Joao Garcia, MD
Age Range: Children and Adults up to age 60 years. At age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante.
Clinic Frequency: Weekly, every Tuesday.
For Clinic Information call Dr. Garcia at 52-999-9490869 and to schedule an appointment, contact Alma Martinez at 52-999-9260207 or receocionneural@gmail.com.
Monterrey, Nuevo León
Hospital Universitario “José Eleuterio González’ Universidad Autónoma de Nuevo León
Director: Ana Beatriz Hinojosa-Amaya, MD
Co-Director: Marisol Ibarra-Ramirez, MD
Coordinator: Melissa Calzada, MD
Age Range Seen: Children and Adults.
Clinic Frequency: Monthly (Schedule subject to change).
For Clinic Information and to schedule an appointment call +52 8183483704.