The Tuberous Sclerosis Alliance (TS Alliance) supports the vital role that a tuberous sclerosis complex (TSC) clinic can play in improving the lives of those affected. The TS Alliance provides a link to a TSC Clinic’s website, if available. Please contact the TSC Clinic or go to its website for details about their specialists, clinic services, billing and insurance, which are subject to change without notice. Please note: Full TSC Clinic listings with contact information appear below the following tables.
If you have a compliment or complaint about a TSC Clinic you'd like to share with the TS Alliance, please download our TSC Clinic Comment Form and submit as noted on the bottom of the form.
Table 1: In February 2010, the TS Alliance Board of Directors adopted and approved guidelines that existing TSC Clinics and new clinical practices should meet to receive TSC Clinic designation. Each TSC Clinic is expected to submit an annual report to maintain its TSC Clinic designation. This table describes the Clinic Standards a clinical practice should meet to receive TSC Clinic designation from the TS Alliance. Clinics are encouraged to achieve the Gold Standards; however, they are not a requisite to receive and maintain TSC Clinic designation.
Table 2: This table lists the location of TSC Clinics by region and the clinic standards they meet as of February 2012.
Table 3: This table shows the specialty types available at each TSC Clinic. Every clinic has at least one board-certified healthcare provider with expertise in diagnosing and/or treating conditions that affect those with TSC.
In 2010, the TS Alliance created a TSC Clinic Ambassador Program to pair a Community Alliance volunteer with a TSC Clinic to help families of children and adults with TSC, especially those newly diagnosed, deal with the emotional challenges of the disorder by sharing their personal experience with TSC, providing them with local and regional resource information, and informing them about Community Alliance activities. TSC clinics currently participating in this program have a Clinic Ambassador named below.
Birmingham
University of Alabama Birmingham Tuberous Sclerosis Clinic
Co-Directors: E. Martina Bebin, M.D., M.P.A. and Bruce Korf, M.D., Ph.D.
Coordinator: Jessica Krefting, B.S.N., R.N.
Clinic Ambassador: Carole Pitard, ccpitard@yahoo.com
Age Range Seen: Children and Adults
Clinic Frequency: Monthly (second Tuesday); additional patients are seen on Wednesday by Dr. Bebin.
Out-of-State Medicaid Policy: Does not accept any.
For more information about the UAB TS Clinic contact Jessica Krefting, B.S.N., R.N. at (256) 533-0833. To schedule an appointment, contact Vickie Garmon in the Department of Genetics at (866) 822-4362 or (205) 934-5567.
Phoenix
APNNA – Arizona Pediatric Neurology & Neurogenetics Associates
Located at 222 West Thomas Road, Suite 406, Phoenix, AZ 85013
Director: Vinodh Narayanan, M.D.
Coordinator: To be named
Range Seen: Children and adults
TSC Clinic Frequency: monthly or as needed basis
For more information or to schedule an appointment, please call (602) 406-6380. Fax number: (602) 406-4067.
Phoenix
The Tuberous Sclerosis Planning Clinic, Children’s Rehabilitative Services (CRS)
Medical Director of CRS Clinic: Cara Wright, M.D.
Director of Neurology Subspecialty Service: Vinodh Narayanan, M.D.
Coordinator: Vicki Huff, R.N.
Range Seen: Children who are enrolled in CRS, the Arizona state-managed Medicaid program.
TSC Clinic Frequency: Quarterly
For more information or to schedule an appointment, contact Sally Cress, RN at (602) 406-4243.
Loma Linda
The Tuberous Sclerosis Clinic at Loma Linda University Health Care
Located at the Pediatric Neuroscience Center, 2195 Club Center Drive, Suite A, San Bernardino, CA 92408
Director: Stephen Ashwal, M.D.
Coordinator: Melissa Rundquist, L.V.N.
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.
Los Angeles
UCLA Pediatric Neurology TSC Clinic
Director: Joyce Y. Wu, M.D.
Coordinator: Alejandra (Alex) Corona
Age Range Seen: Children.
Clinic Frequency: Twice monthly on Monday afternoons.
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 Alex at (310) 206-4037 or email uclatsc@mednet.ucla.edu. For medical questions, ask to speak to Kristina Murata, MSN, FNP-BC or email her at uclatsc@mednet.ucla.edu.
Oakland
The Jack and Julia Center for Tuberous Sclerosis Complex at Oakland Children's
Director: Rachel Kuperman, M.D.
Coordinator: Carrie Krupitsky, R.N., F.N.P.
Age Range Seen: Infants to Adults
Clinic Frequency: Tuesday Mornings
To schedule an appointment, contact Rebecca Casias at (510) 428-3885 ext. 4543.
OrangeChildren’s Hospital of Orange County TSC ClinicDirector: Mary L. Zupanc, M.D.
Coordinator: Wissy Wallis, R.N., P.N.P.
Age Range Seen: Children
Clinic Frequency: Weekly
To schedule an appointment, contact Debbie Merced at (714) 532-8374.
Denver
Children's Hospital Colorado TS Clinic
Director: Susan Koh, M.D.
Co-Director: Kevin Chapman, M.D.
Coordinator: Wynne Bird, B.S.N., R.N., C.P.N.
Clinic Ambassador: Dana Holinka, emme01@msn.com
Age Range Seen: Children
Clinic Frequency: Monthly
Out-of-State Medicaid Policy: No restrictions.
To schedule an appointment, please call (720) 777-6895. Download the clinic's information sheet.
Hartford
Neurogenetics Clinic at Connecticut Children's Medical Center
Director: Francis DiMario, Jr., M.D.
Coordinator: Jamie Cubanski, R.N., B.S.N., C.P.N.
Age Range Seen: Children (will only accept new patients up to age 18 but will continue to see current patients until adulthood)
Clinic Frequency: Weekly, Tuesday a.m.
To schedule an appointment, call (860) 545-9460.
Fairfax, Virginia
Washington Metro Area TS Research Clinic
Director: William McClintock, M.D.
Co-Director: Phillip Pearl, M.D.
Co-Director: Emily Freilich, M.D.
Coordinator: Nancy Elling, R.N., B.S.N., C.P.N.
Age Range Seen: Children and Adults
Clinic Frequency: The TSC Clinic is held the second Monday of the month. A multi-disciplinary clinic for TSC families is held every other month on Saturday, 9 a.m. - 1 p.m.
For information about the TSC Clinic contact Nancy J. Elling, R.N., B.S.N., C.P.N. at (571) 226-8380.
Miami
TSC Clinic at Miami Children's Hospital
Director: Michael Duchowny, M.D.
Co-Director: Ian O'Neil Miller, M.D.
Coordinator: Maria del Pilar Gennaro, M.S.N., A.R.N.P., C.N.R.N.
Clinic Ambassadors: Nilsa Roberts, nilsaa26@aol.com and Vanessa Vazquez, vanessavazquez@bellsouth.net
Age Range Seen: Children and Young Adults
Clinic Frequency: Monthly, every third Tuesday, 8:30 a.m. – 4 p.m. Patients will be seen by physician during morning hours and will receive necessary testing in the afternoon when applicable.
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 Giselle Bisbal at (786) 624-3552.
Atlanta
Atlanta Tuberous Sclerosis Multidisciplinary Clinic without Walls
Located at the Judson L. Hawk Clinic for Children at Children's Healthcare of Atlanta, 5455 Meridian Mark Road NE, Atlanta, GA 30342
Director: To be named
Coordinator: Jennifer Ganote, R.N., A.S.N., C.C.R.C.
Clinic Ambassador: Reiko Donato, donator@bellsouth.net
Age Range Seen: Children up to age 22 years. Adults with TSC will be referred to Sandra Helmers, M.D. at Emory University Medical Center.
TSC Clinic Frequency: Monthly, first Thursday.
Out-of-State Medicaid Policy: Does not accept any.
To make an appointment, contact Jennifer L. Ganote, R.N., A.S.N., C.C.R.C. at (404) 785-2186 or 1-(800)-803-5437; FAX (404) 785-2220.
Chicago
University of Chicago
Director: Michael Kohrman, M.D.
Coordinator: Patti Ogden, M.S.N., A.P.N., N.P.
Age Range Seen: Children and Young Adults
Clinic Frequency: Monthly
To schedule an appointment contact (773)702-6169 and Press “2” for specialty clinic.
Baltimore
Tuberous Sclerosis Clinic at Kennedy Krieger Institute
Director: Tanjala T. Gipson, M.D.
Coordinator: Emily A. Thomas
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
Out-of-State Medicaid Policy: Accepts Delaware, District of Columbia, New Jersey
For more information or to schedule an appointment contact Emily A. Thomas at 443-923-2746. For medical questions, ask to speak to one of the neurology team nurses associated with the TSC clinic.
Boston
The Carol and James Herscot Center for Children and Adults with Tuberous Sclerosis Complex
Director: Elizabeth Thiele, M.D., Ph.D.
Coordinator: Jan Paolini, R.N., M.S.N.
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
To schedule an appointment please call (617) 726-0241.
Boston
Multi-Disciplinary Tuberous Sclerosis Program
Boston Children's Hospital
Director: Mustafa Sahin, M.D., Ph.D.
Coordinator: Jennifer McCrave, R.N., B.S.N., C.N.R.N.
Age Range Seen: Children and Young Adults
Clinic Frequency: Bi-monthly, Fridays 9 a.m. - 1 p.m. with add-on clinic sessions as needed.
Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont.
To schedule an appointment with Mustafa Sahin, M.D., Ph.D. in Pediatric Neurology, call Alicia Kutner at 617-355-8994.
Detroit
Children's Hospital Michigan Tuberous Sclerosis Clinic
Director: Harry T. Chugani, M.D.
Coordinator: Kathleen Pawlik, M.S.N., R.N., C.P.N.P.
Age Range Seen: Children up to age 21 years
Clinic Frequency: Monthly
Out-of-State Medicaid Policy: Accepts any that will reimburse. There is a process for getting Dr. Chugani added to out-of-state provider list.
To schedule an appointment contact Kathleen Pawlik, M.S.N., R.N., C.P.N.P. at 313-745-5788.
St. Paul
TSC Clinic without Walls
Director: Michael Frost, M.D.
Co-Director: John Hulbert, M.D.
Coordinator: Carol Hoskin, R.N.
Age Range Seen: Children and Adults
Clinic Frequency: Daily as needed.
Out-of-State Medicaid Policy: Accepts Colorado, Iowa, Kansas, Montana, North Dakota, South Dakota and Wisconsin.
For appointments, call Carol Hoskins, R.N. at (651) 241-5290 or Elizabeth Siqveland, M.S.N., R.N., C.N.P. (Neurocutaneous Clinic at Children's Hospital) at (612)813-7076.
St. Louis
Washington University Tuberous Sclerosis Clinic
Director: Michael Wong, M.D., Ph.D.
Coordinator: Ashley Fasciola, RN, BSN
Age Range Seen: Children up to age 21 years
Clinic Frequency: Monthly, third Wednesdays.
Out-of-State Medicaid Policy: Accepts Illinois only.
For appointments, call scheduling at (314) 454-6120. For TSC-related questions, call Laura Graves at (314) 454-6120.
Hackensack
Northeast Regional Epilepsy Group (NEREG) Comprehensive Tuberous Sclerosis Clinic
Director: Marcelo Lancman, M.D.
Co-Director: Stephen Thompson, M.D.
Coordinator: Shannon Brophy, N.P.
Age Range: Children and Adults
Clinic Frequency: monthly and as needed for epilepsy/neurology acute management
For more information and to schedule an appointment contact, Lucia Gonzalez at (201) 343-6676; (201) 343-6689 (fax).
New York City
TS Clinic at DDC (Developmental Disability Center) / Beth Israel
Director: Steven Wolf, M.D.
Co-Director: Patricia McGoldrick, N.P., M.S.N., M.P.A.
Age Range Seen: Children and Adults
Clinic Frequency: Monday – Friday at DDC
To schedule an appointment, contact Elissa Morrone at (212) 844-6944.
- Phillips Ambulatory Care Center at Beth Israel - Daily office hours
- Developmental Disabilities Center at Roosevelt Hospital – Medical home model with daily office hours
- Comprehensive Pediatric Epilepsy Center-Beth Israel – 7 day per week monitoring capability with inpatient service
- Hartsdale New York Pediatric Neurology/Epilepsy Office – Monday-Thursday Neurology coverage and Tuesday – Saturday EEG availability
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: James Riviello, Jr. , M.D.
Coordinator: Kimberly Parker Menzer, N.P.
Age Range Seen: Children and Adults
Clinic Frequency: Daily as Needed
To schedule an appointment for a child call (646) 558-0871; for adults call (646) 558-0803.
Cincinnati
The Tuberous Sclerosis Clinic
Director: David N. Franz, M.D.
Administrative Coordinator: Melody Gulleman
Coordinators: Cindy Tudor, C.P.N.P. and Karen Agricola, C.F.N.P.
Age Range Seen: Children and Adults
Clinic Frequency: Weekly
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.
To schedule an appointment or for information, contact Melody Gulleman at (513) 636-4222 or email TSclinic@cchmc.org.
Cleveland
TSC Care at CCF (The Cleveland Clinic Foundation)
Director: Ajay Gupta, M.D., F.A.A.P.
Coordinator: TBN
Age Range: Children up to young adults
Clinic Frequency: First Wednesday of each month. Clinic provides flexibility by coordinating multiple appointments in one visit over 1-2 days.
For more information or to schedule an appointment, contact Lauri Stegman (TSC Clinic Administrator) at 1-800-CCF-CARE ext. 5TSC6 (1-800-223-2273 ext. 58726), 216-445-0601 or email tsc_care@ccf.org.
Columbus
Nationwide Children's TSC Clinic
Director: E Steve Roach, M.D.
Co-Director: Monica P. Islam, M.D.
Coordinator: Joey Burns, R.N., B.S.N., C.N.R.N.
Clinic Ambassador: Lola Centeno, ohiotsc@yahoo.com
Age Range: Children and Adults
Clinic Frequency: First and third Thursday of each month. Third Thursday is with Geneticist.
For more information or to schedule an appointment, contact Patricia Jo Burns, R.N., B.S.N., C.N.R.N. at (614) 722-4625; (614) 722-4633 (fax).
Philadelphia
University of Pennsylvania Medical Center
Director: Katherine Nathanson, M.D.
Coordinator: TBN
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, call (215) 662-4740.
Pittsburgh
Children's Hospital of Pittsburgh TS Clinic
Director: Shelley Williams, M.D.
Coordinator: Jennifer Diserio, C.R.N.P., C.P.N.P.
Age Range Seen: Infants to adults
Clinic Frequency: Monthly
To schedule an appointment, call (412) 692-6170.
Memphis
Le Bonheur Children's Hospital TSC Clinic
Director: James W. Wheless, M.D.
Co-Director: Katherine Van Poppel, M.D.
Coordinator: Delayne Williams, R.N.
Age Range: children under age 18 years and parents of affected children
Clinic Frequency: Weekly
Out-of-State Medicaid Policy: Accepts all that get to them.
For more information or to schedule an appointment call (901) 287-5101 or (901) 287-5207.
Nashville
The TSC Clinic at Monroe Carell, Jr. Children's Hospital at Vanderbilt
Director: Kevin C. Ess, M.D., Ph.D.
Coordinator: To be named
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.
Austin
The Comprehensive Tuberous Sclerosis Program at Dell Children’s Medical Center
Co-Director: Karen C. Keough, M.D.
Co-Director: Freedom (Fred) F. Perkins, Jr., M.D.
Coordinator: Kendall Sharp, R.N., M.S.N., C.P.N.P., A.C./P.C.
Age Range Seen: Children and Adults
Clinic Frequency: Appointments made on an individual basis based on patient’s needs and availability of the provider
Out-of-State Medicaid Policy: information not currently available
To schedule an appointment contact Moises Garcia at 512-628-1898.
Dallas
Texas Scottish Rite Hospital for Children
Director: Steven Sparagana, M.D.
Coordinator: Linda Lezotte, R.N.
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, third and fifth Tuesdays and fourth Thursday of each month.
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, M.D.
Coordinator: Susie Spellman, R.N.
Age Range: Children
Clinic Frequency: Monthly
For more information or to schedule an appointment call Charlene McCue at 682-885-2500.
Houston
The University of Texas Medical School at Houston
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, M.D.
Co-Director: Mary Kay Koenig, M.D.
Coordinator: Joan Roberson, R.N., B.S.N.
Age Range: Children and Adults
Clinic Frequency: New patients are seen the first Monday of each month, 9 a.m.-Noon. Follow-up appointments are the third Tuesday of the month.
For more information or to schedule an appointment, contact Joan Roberson, R.N., B.S.N. at (713) 500-7149.
Charlottesville
The University of Virginia (UVA) Tuberous Sclerosis Clinic
Director: Howard Goodkin, M.D., Ph.D.
Coordinator: Leigh Anne Viemeister, M.S.N., C.P.N.P.
Age Range: Children and Adults
Clinic Frequency: First Monday of each month
For more information, contact Debbie Roberts at (434) 982-3854.
Seattle
Tuberous Sclerosis Clinic/Genetic Epilepsy Clinic at the Pediatric Neuroscience Center Swedish Neuroscience Institute
Director: Marcio Sotero de Menezes, M.D.
Coordinator: Michelle Cote, R.N.
Age Range: Children and young adults
Clinic Frequency: Monday - Thursday from 1 - 4 p.m. (schedule subject to change)
For more information and to schedule an appointment, contact Andrew Johnson at (206) 215-1440; Fax (206) 215-1441.
Madison
American Family Children’s Hospital Multidisciplinary Pediatric Neurocutaneous Disorders’ Clinic
Director: Neha J. Patel, M.D.
Coordinator: Abby Roth, R.N.
Age Range Seen: Children and Young Adults
Clinic Frequency: Bi-monthly on two alternating Mondays of the month
Out-of-State Medicaid Policy: information currently not available
To schedule an appointment or more information call (608) 263-6420 and ask to speak to Abby Roth.
Read the following TS Alliance Policies:
The next TSC Clinic application deadine is July 15, 2013.
For more information about starting a TSC Clinic, please contact JoAnne Nakagawa at jnakagawa@tsalliance.org or 301-562-9890.