Individuals & Families

TSC Clinics

The TS Alliance supports the vital role that a tuberous sclerosis complex (TSC) clinic can play in improving the lives of those affected. In the listings below, the TS Alliance provides a link to a TSC Clinic’s website if available.  If you or your child with TSC are scheduling 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.  Posted information is subject to change without notice. 

TSC Centers of Excellence

Each TSC Center of Excellence must submit an application specifying how it fulfills each of 11 Core Standards and 14 Gold Standards developed by the TS Alliance.

Core Standards encompass three categories of criteria:

  • Clinical Care, including having appropriate specialists and staff;
  • Educational Resource, meaning the clinic serves as a hub for educating the public about TSC; and
  • Partnership, including partnership with TS Alliance at the community and national levels.

Gold Standards include criteria demonstrating:

  • More depth in specific aspects of Clinical Care, serving as an Educational Resource, and Partnership; and
  • Participation in clinical research.

TSC Centers of Excellence must meet all 11 Core Standards and at least 9 of 14 Gold Standards across all categories of criteria. For more detailed information about TSC Clinic Guidelines and Standards, please click here.

TSC Clinic Experience of Care Survey

The TS 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 Jo Anne Nakagawa at jnakagawa@tsalliance.org.

The TS Alliance TSC Clinic Ambassador Program

Dena Hook, Vice President of Support Services, and Jo Anne Nakagawa, Director of  Clinical Projects & TSC Clinic Liaison, administer this volunteer 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 TS Alliance and the volunteer branch in their community, if one is established in their area.

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 | MNOP | Q | R | S | TU | VW | 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
Clinic Ambassador: Carole Pitard, ccpitard@yahoo.com
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 (256) 533-0833.


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.

Phoenix
Children’s Rehabilitative Services (CRS) Tuberous Sclerosis Clinic 
Medical Director of CRS Clinic: Troy Nelson, MD
Director of Neurology Subspecialty Service: Vinodh Narayanan, MD
Age Range Seen: Children who are enrolled in CRS, the Arizona state-managed Medicaid program.
TSC Clinic Frequency: Second Wednesday of every month.
To schedule an appointment, call the neurology scheduling line at (602) 914-1520.


ARKANSAS

Little Rock
TSC Clinic at Arkansas Children’s
Director: Debopam Samanta, MD
Coordinator: Jacqueline Edens, RN, BSN
Age Range Seen: New patients up to age 21 years.
Clinic Frequency: Monthly
For Clinic Information call (501) 364-4941. To schedule an appointment call (501) 364-1850.


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: Jessica Jun, RN
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 in the TSC Clinic.  
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: Tena Rosser, MD
Coordinator: Jamie Gruen, RN
Age Range Seen: New patients under age 18 years.
Clinic Frequency: TSC patients are seen throughout Dr. Rosser’s schedule Mondays, Tuesdays and Wednesdays. Any patients with urgent concerns are prioritized and seen as quickly as possible.
For Clinic Information and to schedule an appointment call Jamie at (323) 361-3455.

Los Angeles
UCLA TSC Clinic
Director: Joyce Y. Wu, MD
Administrative Coordinator: Janet Kor
Age Range Seen: Children and adults.
Clinic Frequency: Weekly.
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 contact Janet at (310) 206-4037.
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
Co-Director: Carrie Krupitsky, RN, FNP
Administrative Coordinator: Mariana Villagran
Clinic Ambassador: Jane Schoenfeld, jane.schoenfeld@gmail.com
Age Range Seen: Infants to Adults
Clinic Frequency: Daily.
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: Lily H. Tran, MD
Co-Director: Donald Phillips, MD, MPH
Coordinator: Mary Crespo, RN
Clinic Ambassador: Tamika Sanchez, TSanchezTSC@yahoo.com
Age Range Seen: Children and young adults up to age 21 years.
Clinic Frequency: Monthly.
To schedule an appointment, contact Mary Crespo, RN, at (714) 509-7601.

San Diego
TSC Multidisciplinary Clinic at Rady Children’s Hospital San Diego
Director: Doris A. Trauner, MD
Coordinator: Sherry Thompson. RN
Age Range Seen: Children and Adults
Clinic Frequency: Monthly every third Thursday.
To schedule an appointment, call Maria Coronel at (858) 966-5819.

Stanford
Northern California TSC Clinic at Lucille 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
Clinic Ambassador: Bridget Britt, bridget.walsh216@gmail.com
Age Range Seen: Children will be seen by Dr. Porter at Lucille 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: Charuta Joshi, MBBS at Children’s Hospital
Co-Director: Samuel DeStefano, MD at University Hospital  (pending Board of Directors approval October 2019)
Coordinator (pediatric):  Wynne Bird, BSN, RN, CPN at Children’s Hospital
Coordinator (adult): Travis Beckstead 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) 848-2087 or email Travis.Beckstead@uchealth.org.
*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
Coordinator: Samantha Moore, RN
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.


DISTRICT OF COLUMBIA AREA

Washington, DC
Washington Metro Area Tuberous Sclerosis Clinic at Children’s National Medical Center    
Director: William McClintock, MD
Co-Director: Amy Kao, MD
Coordinator:  Nancy Elling, RN, BSN, CPN
Age Range Seen: New patients up to young adults.
Clinic Frequency: First and third 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 (571) 405-5961. To schedule an appointment, call the Neurology appointment line at (202) 476-3611.


FLORIDA

Miami  
TSC Clinic at Nicklaus Children’s Hospital Miami
Director: Michael Duchowny, MD
Co-Director: Ian O’Neil Miller, MD
Coordinator:  Maria del Pilar Gennaro, MSN, ARNP, CNRN
Clinic Ambassadors:  Nilsa Roberts, nilsaa26@aol.com
Age Range Seen: Children and Adults
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 Gabriela Martinez at (786) 624-3552 or email at gabriela.martinez@nicklaushealth.org.
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
Co-Director: Joo Hee Seo, MD, MSc
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.

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
Co-Director: Xia Wang, 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
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
Co-Director: Patti Ogden, APN, FNP, NP-C
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: Jacqueline Wolak, DNP, APRN, FNP-C
Administrative Coordinator: Clara Samaniego
Coordinator: Michelle Vergara, 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.


KENTUCKY

Louisville
University of Louisville, Norton Children’s Hospital
Director: Samir Karia, MBBS
Co-Director: Sushil Gupta, MD
Coordinator: Natalie Williams, APRN
Age Range Seen: Children only under age 18 years.
Clinic Frequency: Monthly.  Every 4th Thursday afternoon (schedule subject to change).
For Clinic Information and to schedule an appointment call (502) 588-3650.


MARYLAND

Baltimore
Tuberous Sclerosis Clinic at Kennedy Krieger Institute
Director: Jacqueline Harris, MD
Administrative Coordinator: Jennifer Johnson
TSC Clinic Ambassador: Jocelyn Cenna, portvue@comcast.net
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
Out-of-State Medicaid Policy: Accepts Delaware, District of Columbia, New Jersey
For more information contact Jennifer Johnson at 443-923-2746.  For new patient appointment the number is 443-923-9400 and for follow up appointment 443-923-9540.

Baltimore
University of Maryland
Director: Peter B. Crino, MD, PhD
Coordinator: Joyce Matthews, MS, RN, CNRN
Age Range Seen: New patients 12 years and older.
Clinic Frequency: Weekly.
For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266.


MASSACHUSETTS

Boston
The Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex 
Director: Elizabeth Thiele, MD, PhD
Coordinator: Jan Paolini, RN, MSN, PNP
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) 726-0241.

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 Elizabeth Beers at (617) 355-2711.


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: Steven DeRoos, MD
Coordinator: Lauren Frans, RN
Age Range Seen: Children and adults
Clinic Frequency:  A joint clinic with adult neurology and urology is held every second Thursday of each month.
To schedule an appointment call the HDVCH Welcome Center at 616-267-2500.   For Urgent Appointments ask to speak to Lauren Frans, RN.

Royal Oak
Beaumont Health System Comprehensive TSC Clinic
Director: Danielle A. Nolan, MD
Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC
Coordinator: Emily Salatka, BSN, RN
Clinic Ambassador: Carly Kaye, carly.e.kaye@gmail.com
Age Range Seen: Children and Adults
Clinic Frequency: First and third Friday every month.
For information call Emily Salatka at (248) 551-2275 and to schedule an appointment call Dara Bell at (248) 551-7445.


MINNESOTA

St. Paul 
TSC Clinic Without Walls
Director: Michael Frost, MD
Co-Director: John Hulbert, MD
Coordinator: Sarah Garland, RN BSN
Clinic Ambassador: Kari Ihle, kariihle77@gmail.com, (612) 281-5759
Age Range Seen: Children and Adults
Clinic Frequency: TSC patients are seen two designated Fridays per month for pediatrics and during routine clinic days for adults.  Flexible to meet patient needs.
For information and to schedule an appointment, call Sarah Garland at (651) 241-5290, extension 15385.


MISSOURI

Kansas City
Tuberous Sclerosis Clinic at Children’s Mercy Hospital
Director: Mohammed Ilyas, MD
Co-Director: Laurel Willig, MD
Coordinator: Megan Gustafson, MSN, RN, CPNP
Clinic Ambassadors: Amy Dublinske, dublinske@sbcglobal.net; Laurisa Ballew, laurisa.ballew@gmail.com
Age Range Seen: New patients up to age 21 years.
Clinic Frequency: Monthly, every fourth Thursday (subject to change in July 2019).
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: Pending TS Alliance Board Approval
Co-Director: L. Richard Feldenberg, MD
Coordinator: Julie Engel, 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
Director: Michael Wong, MD, PhD
Coordinator: Ashley Fasciola, RN, BSN
Clinic Ambassador: Rene Friedel, rfriedel@charter.net
Age Range Seen: Children and adults
Clinic Frequency: Weekly every Wednesday morning.
Out-of-State Medicaid Policy: Accepts Illinois only.
For information and to schedule an appointment call (314) 454-4352.


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, NJ
TSC Clinic at Institute of Neurology at St. Barnabas 
Director: Rajeshwari Mahalingam, MD
Co-Director: Orrin Devinsky, MD
Co-Director: Puja Joshi, MD
Coordinator: Nicole Perri, RN
Age Range Seen: Children and Adults
Clinic Frequency: Monthly
For clinic information and to schedule an appointment, please call (973) 322-7042.


NEW YORK

Bronx
Montefiore Medical Center
Acting 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.

New York City
New York Presbyterian/Columbia University Medical Center for Tuberous Sclerosis
Director: Cigdem I. Akman, MD
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
TS Center at Mount Sinai Health System
Director: Steven Wolf, MD
Co-Director: Patricia McGoldrick, NP, MSN, MPA
Coordinator: Toni Kavanaugh, RN, MSHA, MBA, CNRN
Age Range Seen: Children and Adults
Clinic Frequency: Monday – Friday
To schedule an appointment call Toni Kavanagh, RN, MSHA, MBA, CNRN at (212) 241-2401. Due to a high volume of calls, your call will rollover to an answering service after 4 rings. 
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.

  1. Phillips Ambulatory Care Center at Mount Sinai Beth Israel – Daily office hours.
  2. Developmental Disabilities Center at Mount Sinai West – Medical home model with daily office hours.
  3. Comprehensive Pediatric Epilepsy Center-Mount Sinai Kravis Children’s Hospital, Mount Sinai West and Mount Sinai – 7 day per week monitoring capability with inpatient service.
  4. Hartsdale New York Pediatric Neurology/Epilepsy Office – Monday-Thursday Neurology coverage and Tuesday – Saturday EEG available.

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: Kimberly Parker Menzer, AGNP-BC
Age Range Seen: Children and Adults
Clinic Frequency: Daily as Needed
For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. To schedule an appointment contact Samantha Stanhope at (646) 558-0808.  
Esta clínica cuenta con un doctor o un empleado que habla español con fluidez.


NORTH CAROLINA

Charlotte
Atrium Healthcare TSC Clinic at Levine Children’s Hospital
Director: Katherine Van Poppel, MD
Co-Director: Chad Jacobsen, MD
Coordinator: Kari Privette, RN
Age Range Seen: New patients up to age 25 years.
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 Medical Center
Director: Klaus Georg Werner, MD, PhD
Coordinator: Gina Stewart BSN, RN
Clinic Ambassador: Lana Vidal, lana_kozlova@hotmail.com, (201) 565-7662
Age Range Seen: Children and Adults.
Clinic Frequency: Monthly, every third week.
For Clinic Information and to schedule an appointment call (919) 668-4835.

Winston-Salem
Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic
Director: Mary T. Silvia, MD
Co-Director: Roy E. Strowd,III, MD
Administrative Coordinator: Mary Jo Shirley
Age Range Seen: Children and Adults.
Clinic Frequency: Monthly, first Thursday, subject to change.
To schedule an appointment, call (336) 716-4101.


OHIO

Akron
TSC Clinic at Akron Children’s Hospital
Acting Director: Michael Kohrman, MD
Coordinator: Tiffany Berry, 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) 543-0588.

Cincinnati
The Tuberous Sclerosis Clinic
Founding Director: David N. Franz, MD
Director: Darcy Krueger, MD, PhD
Coordinators: Karen Agricola, CFNP; Cindy Tudor, CPNP; Gail McMonigle, RN; and Danielle Miller, RN
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 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: Asim Shahid, MD
Co-Director: Deborah Rukin Gold, MD
Coordinator: Adina Chirla, BSN, RN
Age Range Seen: Children and Young Adults up to age 21 years.
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
Coordinator: Gada McMahen, RN, CPN
Clinic Ambassador: Lola Centeno, hseonelm@aol.com
Age Range: Children
Clinic Frequency: Third Thursday of each month.
For more information about the clinic call (614) 722-4109 and to schedule an appointment call (614) 722-4610.

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

Philadelphia
University of Pennsylvania Medical Center (HUP) and Children’s Hospital of Philadelphia (CHOP)
Director: Katherine Nathanson, MD
Co-Director: Katherine Taub, MD
Administrative Coordinator: Megan Lawrence
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.


TENNESSEE

Memphis
Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital
Director: John J. Bissler, MD
Co-Director: James W. Wheless, MD
TAND Unit Director: Tanjala T. Gipson, MD
Coordinator: Kristy Jones, RN, tscoe@lebonheur.org
Clinic Ambassador: Brittany Schwaigert, bschwaigert@gmail.com or (901) 238-7665 mobile
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) 287-7493.  To schedule an appointment call (901) 287-7491. 

Nashville
The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt
Director: Kevin C. Ess, MD, PhD
Coordinator:  Jennifer Garafola, MSN, RN, CPN
Clinic Ambassador: Mark Martin, markamartin2002@yahoo.com
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
Children’s Comprehensive Care clinic at Dell Children’s Medical Center
Director: Karen C. Keough, MD (Pediatrics)
Co-Director: Deborah Briggs, MD (Adults)
Coordinator: Alice Jefferson, RN
Clinic Ambassador: Sheryl Kubala
Age Range Seen: Children
Clinic Frequency: Monday – Friday, 7:30 am – 5:00 pm
For information or to schedule an appointment for your child who is less than 18 years of age, please contact the Comprehensive Care Clinic at (512) 628-1833 to speak with the enrollment coordinator, Nohemi Ruiz.
Esta clínica cuenta con un doctor o un empleado que habla un poco de español.

Dallas
Texas Scottish Rite Hospital for Children
Director: Steven Sparagana, MD
Coordinator: Linda Lezotte, RN
Clinic Ambassador: Tricia Bodner
Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason.
Clinic Frequency: First, second, third, fifth Tuesdays and fourth Thursday every month.  Beginning December 19, 2019, the fourth Thursday clinic permanently changes to the third Thursday.
Out-of-State Medicaid Policy: Does not accept any.
For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org.

Ft. Worth
Cook Children’s Clinic for Tuberous Sclerosis Complex
Director: M. Scott Perry, MD
Coordinator: Amy Davis, BSN, RN
Age Range: Children
Clinic Frequency: First Tuesday of each month.
For more information or to schedule an appointment call  Amy Davis at (682) 885-7259.

Houston
University of Texas-Memorial Hermann TSC Center of Excellence 
Affiliated with Memorial Hermann Hospital
Children’s Memorial Hermann Hospital
The University of Texas, Houston
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:  Alejandro Carrillo, RN, BSN
Clinic Ambassador: Victoria Newberry, (832) 331-3561 mobile
Age Range: Children and Adults
Clinic Frequency: First and fourth Monday and third Tuesday every month.
For more information about the TSC Clinic contact Alejandro Carrillo, 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:  Laura Cairampoma, RN, BSN
Administrative Coordinator: Truzella Benton
Clinic Ambassador: Victoria Newberry, (832) 331-3561 mobile
Age Range: Children
Clinic Frequency:  Monthly, every third Wednesday. 
For information or to schedule an appointment call Truzella Benton at (832) 822-0996.


UTAH

Salt Lake City
University of Utah TS Clinic
Director: Francis M. Filloux, MD
Co-Director: David Viskochil, MD, PhD
Coordinator: TBD
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.
For information about the TSC Clinic contact Katie Ruesch at katherine.ruesch@hsc.utah.eduTo schedule an appointment call the Department of Pediatric Scheduling at (801) 213-3599.


VIRGINIA

Charlottesville
The University of Virginia (UVA) Tuberous Sclerosis Clinic
Director: Howard Goodkin, MD, PhD
Co-Director: Erika Axeem, MD (Pediatrics)
Co-Director: Derek Bauer, MD (Adults)
Coordinator:  Brooke Henry, 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
Co-Director: Soundarya Gowda, MD
Coordinator: Laura Sutherland, RN
Age Range: Children and Adult.
Clinic Frequency: Monthly.
For Clinic Information and to schedule an appointment call (804) 828-9350.


WASHINGTON

Seattle
TSC Clinic at Seattle Children’s Hospital
Director: Stephanie Randle, MD, MS
Co-Director: Sarah Kiel, RN, MSN, CRNP-PC/AC
Coordinator: Lorraine Giesbert, RN, CPN
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) 987-2078.

Seattle
Swedish Neuroscience Institute
Director: Marcio Sotero de Menezes, MD
Co-Director: Michael Doherty, MD
Coordinator: Christina Schaffner, RN
Age Range: Children and Adult.
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
Co-Director: Dawn Siegel, MD
Coordinator: Lisa Koneazny, RN, BSN
Age Range: Children and Adults.
Clinic Frequency: Weekly, every Wednesday all day.
For Clinic Information call (414) 266-2935 and to schedule an appointment call (414) 266-3347.


CANADA

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.

Toronto, Ontario
Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children
Director: Robyn Whitney, MD, FRCPC
Co-Director: Maria Zak, MN, NP

Coordinator: Valerie W. Chan, RN, BScN, CNN(C)
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
University Health Network, The Fred A. Litwin Family Centre in Genetic Medicine
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 4220 and to schedule an appointment contact adultgenetics@uhn.ca or Reeshni Asokan at (416) 586-4800 extension 4220.


INDIA

Mumbai, Maharashtra
Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute
Director: Pradnya Gadgil, MBBS, MRCPCH
Coordinator: Tejaswi Salashar GNM
Age Range Seen: Children only under age 18 years.
Clinic Frequency: As needed for new TSC patients.   Weekly for returning patients.
For Clinic Information call +91-22-30937298.  To schedule an appointment call +91-9324787559, +91-22-30666666.


ISRAEL


Be’er Shiva
The Clinic for Multidisciplinary Treatment of TS at Soroka Medical Center
Director: Iris Noyman, MD
Age Range Seen: Children and Adults
Clinic Frequency: Every 8 weeks.

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
The Clinic for Multidisciplinary Treatment of Tuberous Sclerosis at Safra Children’s Hospital, Sheba Medical Center
Director: Michal Tzadok, MD
Coordinator: Michal Leithner Sanigo
Age Range Seen: Children and adults
Clinic Frequency: Every first Sunday


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.


TSC Clinic Application Process

To begin the TSC Clinic application process, please review the TS Alliance and TSC Clinic Scope of Relationship Policy and our TSC Clinic Guidelines then complete the applicable TSC Clinic Application Form: US/Canada version or global version. Clinicians interested in applying for clinic designation should contact Jo Anne Nakagawa, Director of Clinical Projects & TSC Clinic Liaison, at jnakagawa@tsalliance.org or (301) 562-9890 to confirm there haven’t been any changes or with any questions.

Next Application Deadline: January 8, 2020 (TSC Clinic application submission deadline is 11:59 pm applicant’s local time.)

Applicant(s) will be notified of decision on or by March 31, 2020.