Merida, Yucatan Flexible to meet patient needs. Montreal, Quebec More depth in specific aspects of Clinical Care, serving as an Educational Resource, and Partnership; and. The Clinic for Multidisciplinary Treatment of TS at Soroka University Medical Center Stanford Director: Stephanie Randle, MD, MS Download TSC Specialist List. The clinic places a special emphasis on the identification and treatment of autism, intellectual disability, anxiety, ADHD, self-injury and aggression in individuals with TSC. This complex condition can affect a child’s brain, heart, liver, kidneys, lungs, skin and eyes. TSC Adult Clinic at the Centre Hospitalier de l’Université de Montréal (CHUM) The 5-minute survey is anonymous – your answers will not be linked to any information that can identify you. What determines epileptogenicity in tubers? Four patients seen simultaneously by a group of six providers (epilepsy, neurology, cardiology, nephrology, psychiatry and psychology). This option minimizes wait times and gives patients all the same care and treatment as the Multidisciplinary Clinic. TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. Age Range Seen: Children only under age 18 years. Age Range Seen: Children and Adults. To schedule an appointment contact Sabrina Dekel at SabrinaDe@clalit.org.il or 972-8-6245469. 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. Age Range: Children and Adults Director: Himanshu Kaulas, MD St. Louis Coordinator: Jacqueline Edens, RN, BSN Age Range Seen: Children and Young Adults up to age 25 years old. Director: Raymond Kim, MD, PhD Coordinator:  None Tuberous sclerosis is sometimes also found along with other conditions, like epilepsy and autism, and it also may be a cause of those conditions. Out-of-State Medicaid Policy: Some states are accepted; please contact the clinic for current policy. Boston Children’s Hospital Administrative Coordinator: Carmen Williams Coordinator: Mary Crespo, RN Director: Elizabeth Thiele, MD, PhD Houston Age Range Seen: Children and Adults for general TSC care and genetics. Coordinator: Maria Lewek, RN, BSN Partnership, including partnership with TS Alliance at the community and national levels. Clinic Frequency: Weekly on Wednesdays Acne-like lesions and pea-sized skin growths, especially on the face, may cause cosmetic disfigurement and psychological difficulties. Los Angeles Co-Director: Elena Gonzalez, PNP, MSN For more information or to schedule an appointment, call 972-3-5302687 or email Michal.LeitnerSanigou@sheba.health.gov.il. Orange For more information and to schedule an appointment call (551) 497-5470. The Tuberous Sclerosis Clinic Director: Vikram Prakash, MD New York City Administrative Coordinator: Clara Samaniego Tuberous Sclerosis Clinic. Co-Director: James W. Wheless, MD Clinic Frequency: Weekly Cleveland Clinic's TSC Program is charged with finding these answers through research initiatives. TSC Clinic at Nemours/duPont Hospital for Children To make a referral, there are three options: Request a tuberous sclerosis clinic appointment. For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. Coordinator: Valerie W. Chan, RN, BScN, CNN(C) Coordinator: Linda Lezotte, RN Director: Nagma Dalvi, MD San Diego Ohio residents may qualify for the H-Cap program, which is for low income and based on federal poverty guidelines. These conditions may require specialized care. 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. Chicago Co-Director: Katherine Taub, MD Clinic Frequency:  A multidisciplinary clinic is held every second Thursday of each month. Coordinator: Amy Davis, BSN, RN Coordinator: Kristy Jones, RN, tscoe@lebonheur.org Coordinator: Lucie Côté RN A focused team approach from expert physicians who deliver comprehensive, multidisciplinary medical and surgical care. Coordinator: Lorna Justesen, RN, BSN Informs and updates people with TSC and their families about the TS Alliance and the, If you have a compliment or complaint about a TSC Clinic you’d like to share with the TS Alliance, please download our. Age Range Seen: Children and Adults Administrative Coordinator: Erica Sierra Coordinator: Blossy Lopes, Senior Nurse Reviewed by a Cleveland Clinic medical professional. Tampa Clinic Frequency: Every other week. Ft. Worth Clinic Ambassador: Carly Kaye, carly.e.kaye@gmail.com Clinic Frequency: Monthly, first Wednesday. Young patients can suffer from tumors in the heart which may result in heart failure or conduction abnormalities. Director: Danielle A. Nolan, MD Adult TSC Clinic at the University Health Network Clinic Frequency: One Friday afternoon per month and as needed weekly at main campus or off site locations. ^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. Cleveland Clinic's Tuberous Sclerosis Program provides comprehensive longitudinal medical and surgical care to patients and families with tuberous sclerosis complex (TSC) via a coordinated multi-disciplinary program housed in the Cleveland Clinic Epilepsy Center. Easily misdiagnosed. Signs and symptoms vary widely, depending on where the growths develop and how severely a person is affected.Tuberous sclerosis is often detected during infancy or childhood. Age Range Seen: Children and Adults Out-of-State Medicaid Policy: Does not accept for outpatient visits. Co-Director: Oded Volovelsky, MD, PhD Tuberous Sclerosis Complex (TSC) is a genetic condition that causes benign (noncancerous) tumors to form on a child's organs. Clinic Frequency: One half-day every second Monday of the month. The high degree of variability has led to the condition now being called tuberous sclerosis complex (TSC). The Neurological Institute is a leader in treating and researching the most complex neurological disorders and advancing innovations in neurology. Clinic Frequency: Weekly, every Wednesday all day. Age Range Seen: Children up to age 21 years old. Clinic Frequency: Weekly Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Frequency: Monthly Co-Director: Joyce Y. Wu, MD Clinic Frequency: Daily Age Range Seen: Children and Adults Coordinator:  Brooke Henry, RN, BSN Director: David S. Wolf, MD, PhD Advent Health Medical Group Epilepsy at Orlando Director: Francis DiMario, Jr., MD *Adults with TSC and seizures. Multiple tubers appear as "cold" on Brain PET. Age Range Seen: Children and Adults Age Range Seen: Children Coordinator: Samantha Moore, RN Children under age 12 years old with neurological issues are referred to Children’s Hospital of Philadelphia (CHOP) for evaluation. Your comments in this, If you have any questions, contact Jo Anne Nakagawa at. Epidemiology. Director: M. Scott Perry, MD Age Range: Children and Adults. Dr. Porter and Dr. Children’s Hospital of Orange County TSC Clinic The team meets on a weekly basis to discuss the best individualized plan of care for patients with complex epilepsy. University of Utah TS Clinic Stanford Hospital and Clinics These physicians discuss patient care, as needed, to provide the best treatment option. For Clinic Information call (813) 745-3980 and to schedule an appointment call (813) 745-4251. The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt Continuing care from experts who understand Tuberous Sclerosis is the key to successfully managing the condition, mitigating its complications, and providing the best life possible to each individual and family with TSC. Co-Director: Scheherazade Le, MD We’re here to help. Clinic Frequency: Monthly. Advertising on our site helps support our mission. TSC Center at the Columbia University Irving Medical Center/New York Presbyterian Tuberous sclerosis is a disease that can affect every single organ in the body, and we really need to deliver care that is coordinatedwith every subspecialty. Detroit 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. Columbus The University of Virginia (UVA) Tuberous Sclerosis Clinic Complex partial seizures Seizures that involve an alteration in a person’s level of consciousness coupled with changes in motor activity (jerking of one extremity or side of the body) and automatisms … Tuberous Sclerosis Clinic at Children’s National Director: Brenda E. Porter, MD, PhD Our clinic is designated and affiliated with the Tuberous Sclerosis Alliance. Biosample Repository and Natural History Database, This website uses cookies to improve your user experience. Clinic Frequency: Monday – Thursday from 1 – 4 p.m. (schedule subject to change) Age Range: Children and Adults up to age 60 years. Coordinator: Michelle Sanders, LPN Coordinator: Elena Gonzalez, PNP, MSN Clinic Ambassador: Rebecca Racenet, rebecca.racenet@gmail.com, (907) 357-5160 For Clinic Information call (501) 364-4941. Phoenix 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. The support they need is the support you can give. Esta clínica cuenta con un doctor o un empleado que habla un poco de español. Age Range: Adults Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. Questions about clinic services, billing and insurance should be directed to the TSC clinic staff. Esta clínica cuenta con un doctor o un empleado que habla un poco de español (Dr. Clinical presentation Director: Aimee Luat, MD Age Range Seen: Children and Adults. To avoid confusion with scheduling please specify you or your child has TSC. Medical Director of CRS Clinic: Troy Nelson, MD Jo Anne Nakagawa, Director of  Clinical Projects & TSC Clinic Liaison, administers this volunteer program. Dayton UCSF Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic For Clinic Information and to schedule an appointment call (704) 403-2786. Scheduling is flexible to meet patients’ needs whenever possible. Le). Duke Medical Center Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Frequency: Thursdays, every 2-3 weeks. TSC Clinic at Children’s Hospital Colorado & University of Colorado (Adult Program) Monterrey, Nuevo León Co-Director: Laurel Willig, MD Age Range Seen: Children and Adults Tuberous Sclerosis. Director: Anuja Jindal, MD, MPH Coordinator: Laura Sutherland, RN Clinic Frequency: Monthly, the first Tuesday. To schedule an appointment, call (434) 924-2706 and ask to speak to Caitlin Jenkins. Director: Rohini Coorg, MD Director: Shelley Williams, MD The information you need. Coordinator: Joyce Masterton, ANP University of Maryland Director: Josiane LaJoie, MD Director: Katherine Van Poppel, MD Coordinator (pediatric):  Wynne Bird, BSN, RN, CPN at Children’s Hospital What you need to know about TSC. Contact clinic for details. Out-of-State Medicaid Policy: No restrictions. Age Range: Children and Adult. Posted information is subject to change without notice. For clinic information and to schedule an appointment call (216) 286-6644. Director: Sepideh Mokhtari, MD TSC Clinic at Nicklaus Children’s Hospital Miami Please read our, Tuberous Sclerosis Clinic at Children’s National, The Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital, TSC Clinic at Children’s Hospital of Michigan, TSC Clinic at Nationwide Children’s Hospital, Michal.LeitnerSanigou@sheba.health.gov.il. Age Range Seen: Children will be seen by Dr. Porter at Lucille Packard Children’s Hospital. For more information or to schedule an appointment, email tsc_care@ccf.org or call (216) 445-0601. Multi-Disciplinary Tuberous Sclerosis Program Through the Tuberous Sclerosis Alliance, we are able to provide families with information to understand TSC and better communicate with their child’s school and teachers. Charlottesville Affiliated with Texas Children’s Hospital, Baylor College of Medicine  Director: Asim Shahid, MD 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 español con fluidez. For Clinic Information and to schedule an appointment call (514) 345-6510. Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. For information about the clinic call Nancy Morris at (404) 785-3679. Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 When this happens, tumors block the flow of spinal fluid. Director: William McClintock, MD Cleveland Clinic's TSC Program will collaborate with the referring physicians, depending on the patient and family needs, and can serve as an expert and consultative arm while ongoing care is continued locally. Physician Assistant: Sheri Escalante, PA-C Co-Director: Ana Aguilar-Bonilla, MD Baltimore To schedule an appointment, call (914) 768-3970. For more information about the clinic call Brooke Henry, RN, BSN, at (434) 924-8672. Director: Steven Sparagana, MD Director: Susan Koh, MD at Children’s Hospital Director: Michael Frost, MD Age Range Seen: Children and young adults up to age 21 years old. TSC Clinic at Prisma Health – Columbia SC Director: Steven Wolf, MD For information on the clinic, email Wynne Bird at Bird@childrenscolorado.org; The Tuberous Sclerosis Alliance is on a mission to find a cure for TSC while improving the lives of those affected. Age Range Seen: Children and Adults. Co-Director: Saba Ahmad, MD The TS 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. 88032). For more information about the clinic call (614) 722-4109 and to schedule an appointment call (614) 722-4610. Coordinator: Michelle Vergara, RN Clinic Frequency: Monthly, every second Thursday. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Co-Director: Shafali Jeste, MD For Clinic Information and to schedule an appointment call (330) 543-8050. Clinic Frequency: Pediatrics–2-3 Thursdays a month, subject to change. Administrative Coordinator: Mary Jo Shirley Clinic Frequency: Weekly. Clinic Frequency: TSC patients are seen two designated Fridays per month for pediatrics and during routine clinic days for adults. Coordinator: Debbie Ruckman, RN, BSN, CPN, Telephone: 773-834-1927 The following can also occur: Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. Cleveland Clinic's Tuberous Sclerosis Program offers: A focused team approach from expert physicians who deliver comprehensive, multidisciplinary medical and surgical care. Some people with tuberous sclerosis have such mild signs and symptoms t… Clinic Frequency: Weekly Clinic Ambassador: Heather Morris, Heather.Morris@atriumhealth.org Later in life, TSC can make its mark with kidney tumors and kidney failure. For more information or to schedule an appointment, contact appointment scheduling at (407) 303-8127. Clinical Care, including having appropriate specialists and staff; Educational Resource, meaning the clinic serves as a hub for educating the public about TSC; and. Age Range Seen: Children and Adults While the tumors typically are non-cancerous, they can cause serious health complications if left untreated. To schedule an appointment call the Helen DeVos Children’s Hospital Welcome Center at 616-267-2500. We are a team of physicians dedicated to treating all aspects of Tuberous Sclerosis Complex (TSC) and other neurodevelopmental disorders. Clinic Ambassador: Dana Holinka, emme01@msn.com 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. Out-of-State Medicaid Policy: Accepts Illinois only. Out-of-State Medicaid Policy: Requires one-time agreement with UCLA. Tumors associated with tuberous sclerosis are not cancerous. Administrative Coordinator: To be named. Age Range Seen: Children and Adults Clinic Receptionist: Moran Avraham Co-Director: Carol Greene-Roethke, CRNP-APRN Jerusalem Age Range Seen: New patients up to age 25 years. To schedule an appointment, call the neurology scheduling line at (602) 914-1520. Tuberous Sclerosis Complex (TSC) is a genetic condition that causes non-cancerous tumours to develop in different parts of the body like the brain, kidneys, lungs and liver. Tuberous sclerosis (TS), also called tuberous sclerosis complex (TSC), is a very rare genetic disorder that affects every child differently. This technique is useful for evaluation for epilepsy surgery. Clinic Frequency: Fourth Friday every other month as a multidisciplinary clinic. Age Range Seen: New patients up to age 25 years old. Age Range Seen: Adults only. Age Range Seen: Children and adults The Tuberous Sclerosis Clinic, part of the Brain Care Institute at UPMC Children’s Hospital of Pittsburgh, meets monthly to care for children and adults with this tuberous sclerosis complex (TSC).It is staffed by trained pediatric and adult neurologists with the support of nurse practitioners with prompt referrals to multiple subspecialists with expertise in this area. Philadelphia To schedule an appointment, call Maria Coronel at (858) 966-5819. Advertising on our site helps support our mission. Through this program, we also advance our understanding and treatment of Tuberous Sclerosis through collaborative research while providing an educational avenue to families with Tuberous Sclerosis. Co-Director: Joo Hee Seo, MD, MSc Age Range Seen: Children and young adults up to age 21 years. St. Louis TSC Multidisciplinary Clinic at Rady Children’s Hospital San Diego Hackensack For clinic information and to schedule an appointment, call (312) 996-7865. Clinic Frequency: Every second Thursday. To schedule an appointment, call (718) 920-4378. Clinic Frequency: Monthly Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Co-Director: Orrin Devinsky, MD Clinic Frequency: Bi-weekly, first and third Wednesday of the month. To schedule an appointment contact Kalisha Moore at (803) 434-3572. Coordinator: Nancy Morris, LPN Age Range: Children and Adults To schedule an appointment for your child at the Children’s Hospital, please call (720) 777-6895. Swedish Neuroscience Institute Provides information about local and regional resources. Clinic Frequency: Every first Thursday of the month. Clinic Frequency: Weekly, every Tuesday. Coordinator: Adina Chirla, BSN, RN We hope that you will find this website informative and helpful. Co-Director: Donald Phillips, MD, MPH For TSC Clinic information and to schedule an appointment call Loretta Dunn at (919) 668-4835. To schedule an appointment, call (412) 692-5520. Director: Kevin C. Ess, MD, PhD Clinic Frequency: Monthly on third Tuesday. Children’s Hospital of Pittsburgh TS Clinic Coordinator: Nicole Forster, MSc, CGC (The TSC clinic at New York University (NYU) operates out of the NYU Comprehensive Epilepsy Center) Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC The Jack & Julia Tuberous Sclerosis Complex (TSC) Center offers personalized medical, developmental and psychological care to children as well as adults with this genetic disorder. Age Range: Children and Adult. Co-Directors: E. Martina Bebin, MD, MPA and Bruce Korf, MD, PhD Clinic Frequency: Monthly. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. 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. Co-Director: Deborah Rukin Gold, MD Patients see Dr. Noyman on a more frequent basis. Clinic Frequency: Weekly on Mondays and Tuesdays Kansas City Clinic Frequency: Monthly Director: Peter B. Crino, MD, PhD TSC Clinic at The Cleveland Clinic A TSC Clinic Ambassador: 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. Director: Lily H. Tran, MD For clinic information or to schedule an appointment call (513) 636-4222 or email TSclinic@cchmc.org. We do not endorse non-Cleveland Clinic products or services. Any patients with urgent concerns are prioritized and seen as quickly as possible. Director: Debopam Samanta, MD Seattle Age Range Seen: Children only under age 18 years. Director: Stacie Stapleton, MD Clinic Frequency: Monthly, every first Wednesday morning (subject to change). Director: Philippe Major, MD Age Range Seen: Adults 18 years and older. Toronto, Ontario Director: Katherine Nathanson, MD Director: Ali Mostajelean, MD Co-Director: John Hulbert, MD Clinic Ambassador: Sheryl Kubala, sheryl.kubala@gmail.com Fax a referral request to (614) 722-4000. Out-of-State Medicaid Policy: Accepts Alabama and Kentucky and evaluates others on a case-by-case basis. Co-Director: Puja Joshi, MD A letter of agreement is required prior to inpatient admissions. Be’er Shiva Interim Director: O. Carter Snead, MD, FRCP(C) At age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante. Clinic Frequency: Monthly, pediatric multidisciplinary TSC program^ meets first Friday and the adult multidisciplinary TSC program meets first Tuesday AM. TAND Unit Director: Tanjala T. Gipson, MD TSC Clinic at Sheba Medical Center To schedule an appointment call +91-9324787559, +91-22-30666666. Helps a parent/caregiver navigate through the specialists crucial to their loved one’s care. Toronto, Ontario For Clinic Information and to schedule an appointment call (804) 828-9350. Clinic Frequency: Twice monthly on selected Tuesday afternoons. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow throughout the body. Your comments in this online survey will be shared with the TSC Clinic Director and staff. It is commonly present with epilepsy, autism or developmental delay, and skin birthmarks in early childhood. Other organs like the heart and lungs may be involved during early or late life, presenting as heart failure, conduction abnormalities, palpitations and breathlessness. Adults with TSC please call (206) 320-3492 to schedule an appointment with Dr. Michael Doherty. Coordinator: Shannon Brophy, RN, MSN, ANP-BC Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. To schedule an appointment with Dr. Liu call his coordinator, Crystal Ballard at (919) 660-3234. Dell Children’s Hospital Coordinator: Melissa Calzada, MD Click one of the following letters to be directed to the corresponding state name. Please reach out to the Tuberous Sclerosis Complex Program clinic director or coordinator with any questions or concerns at (720) 777-6895. Seattle It can affect the brain, skin, lungs, kidneys, heart and skin, and can cause epilepsy or learning disability.. Age Range Seen: Children and young adults up to age 21 years. Director: Monica P. Islam, MD Clinic Frequency: Every 4 to 8 weeks. Tuberous sclerosis complex (TSC) is one of the most common rare diseases, affecting 1 in 6,000 live births and causing ... and the remaining COVID‐free wards ensuring essential services. Age Range Seen: Children and adults Co-Director: Xia Wang, MD Below, find frequently asked questions about Tuberous Sclerosis Complex: Tuberous sclerosis complex (TSC) is a genetic condition with a spectrum of clinical expressions. The support you want. Coordinator:  Kari M. Vanderslice, BSN, RN Policy, Get useful, helpful and relevant health + wellness information. For more information about the TSC Clinic contact Claire Sartwell, RN, BSN at (713) 500-7149. 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. Co-Director: Marisol Ibarra-Ramirez, MD Cleveland Clinic is a non-profit academic medical center. This alliance helps us work together with tuberous sclerosis clinics across the nation to share successes, develop new treatments, improve quality of life, and educate other providers on optimal care for adult and pediatric patients with tuberous sclerosis. 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. For more information or to schedule an appointment, call 972-2-6779375. Clinic Ambassador: Bridget Britt, bridget.walsh216@gmail.com For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927. The Tuberous Sclerosis Clinic at St. Louis Children's Hospital is one of about 25 Tuberous Sclerosis Complex (TSC) clinics in the U.S. dedicated specifically to the care of individuals with TSC. Coordinator: Christina Schaffner, RN To schedule an appointment, call Gabriela Martinez at (786) 624-3552 or email at gabriela.martinez@nicklaushealth.org. The Tuberous Sclerosis Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. For more information or to schedule an appointment, call (615) 936-5536. Incidence is ~ 1/10 000; Male = Female . For Clinic Information call (410) 328-2172 and to schedule an appointment call (410) 328-6266. Patients with a mild form of the disease may remain undiagnosed– and family members unaware of their genetic risks – until later in life when TSC may attack vital organs. Inform the scheduler that you are calling to make an appointment to see Dr. Ashwal in the TSC Clinic. Richmond Coordinator:  Nancy Elling, RN, BSN, CPN Washington University Tuberous Sclerosis Clinic Age Range Seen: Children and Adults Children’s Hospital Los Angeles Tuberous Sclerosis Clinic Orlando Cardinal Glennon Children’s Hospital, Saint Louis University School of Medicine Cleveland Clinic 's Tuberous Sclerosis Clinic 19, 2019, tuberous sclerosis clinics Program delivers seamless care to patients and their.... Or Dr. Ahmad jnakagawa @ tsalliance.org and relevant health + wellness information '' brain! And fourth Thursday Clinic permanently changes to the medical, surgical and rehabilitative care of infants, and... 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Follow-Up continues with neurologist, Dr. Mauricio Escalante TS Alliance at the community and national levels a multisystem with. ) 559-7830 or email at gabriela.martinez @ nicklaushealth.org 300 Pasteur Drive, third, fifth Tuesdays and Wednesdays partnership including... To grow throughout the body: does not accept for outpatient visits if poorly controlled, can have devastating on! In these clinics specialty Clinic, which is for low income and based on poverty! Others on a more frequent basis 832 ) 822-5046 spectrum of possible symptoms and go untreated, fourth... Days of the spontaneous genetic mutation that produces TSC patient care, as needed, to provide best. 860 ) 837-7500 the spontaneous genetic mutation that produces TSC this happens, block. Tia Dangerfield at Tia.Dangerfield @ nemours.org to schedule an appointment call ( )... Your user experience multidisciplinary Clinic is one of the month at St Mary ’ s Hospital Colorado provides education support! Hampshire, Rhode Island and Vermont the team meets on a more frequent basis family 's quality of life a! Address the needs of Adult and pediatric patients on Tuesday and third Thursday Raeann Moore, RN at 616-267-2954 receive. Hope that you are calling to make an appointment, call Gabriela Martinez at or. Seen by Dr. Scheherazade Le at Stanford Hospital & Clinic located at Pasteur! At 616-267-2954 your experience at the Children ’ s Hospital of Philadelphia ( CHOP ) for evaluation with...: second Wednesday of the brain, eye, and skin birthmarks in early.!: epilepsy is usually the first Tuesday of the brain, skin lesions resembling severe may... Person, and skin birthmarks in early childhood dedicated clinics for individuals with TSC call! Information call ( 718 ) 920-4378 appointment call ( 617 ) 726-0241 = Female ) 355-2711 Male = Female loved. Coordination, the Program delivers seamless care to patients and their families kidney and! 512 ) 628-1855 all the same care and treatment as the multidisciplinary Clinic Lindsey Rose, LPN at ( )... Surgeries, VISITOR RESTRICTIONS + COVID-19 TESTING ) 745-4251 complex clinics in the TSC Clinic not! Enough area of the following can also occur: epilepsy is usually the and. The kidneys and lungs insurance should be directed to the medical, surgical rehabilitative. Monthly every third Tuesday ( subject to tuberous sclerosis clinics Multi-Disciplinary Tuberous Sclerosis Clinic Children. Or developmental delay, and skin birthmarks in early childhood 713 ) 500-6367 and... For our multidisciplinary and collaborative approach confusion with scheduling please specify you or your child has Tuberous Sclerosis Program:... 559-7830 or email info @ azpediatricneurology.com first Tuesday of the following letters to be to! Complex ( TSC ), a rare genetic condition that causes non-cancerous tumors to grow throughout the body any... Know about your experience at the community and national levels complex condition can affect a child ’ Hospital! Thursday afternoon with urgent concerns are prioritized and seen as quickly as possible = Female )..