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tuberous sclerosis clinics

tuberous sclerosis clinics

Age Range: Children Austin Director: Tena Rosser, MD Scheduling is flexible to meet patients’ needs whenever possible. Co-Director: Rajsekar (Raj) Rajaraman, MD Clinic Frequency: Monday – Thursday from 1 – 4 p.m. (schedule subject to change) Cleveland Clinic is a non-profit academic medical center. Co-Director: Melissa Gregory, MD Coordinator: TBN For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. Clinic Frequency: TSC patients are seen two designated Fridays per month for pediatrics and during routine clinic days for adults. Age Range Seen: Children and Adults Director: Steven Sparagana, MD Clinic Ambassador: Tricia Bodner For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. Ohio residents may qualify for the H-Cap program, which is for low income and based on federal poverty guidelines. TSC Center at the Columbia University Irving Medical Center/New York Presbyterian There is no cure for TSC, but when we deliver care to patients via our TSC Program, we coordinate services that accommodate their ongoing needs from a staff of professionals who understand the condition. Director: Nagma Dalvi, MD For information and to schedule an appointment, call Lorna Justesen at (651) 241-5541 or (651) 241-5290. Dallas Coordinator: Natalie Williams, MS, MSN, APRN Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC To schedule an appointment call Susan Dewitt at (502) 588-3650, extension 50032. 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. To schedule an appointment call (901) 287-7491. Age Range Seen: Children and Adults. Age Range Seen: New patients up to age 25 years. Co-Director: Saba Ahmad, MD 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. Clinic Frequency: The local practice is to see patients as and when they come. Director: Himanshu Kaulas, MD That is absolutely critical. For Clinic Information and to schedule an appointment call (514) 890-8000 extension 26419. To schedule an appointment at HUP, call (215) 662-4740. Both children and adults can be seen in these clinics. Boston Children’s Hospital For information about the TSC Clinic contact Nancy J. Elling, RN, BSN, CPN at (571) 405-5961. Core Standards encompass three categories of criteria: Gold Standards include criteria demonstrating: TSC Centers of Excellence must meet all 11 Core Standards and at least 9 of 14 Gold Standards across all categories of criteria. Clinic Frequency: Weekly every Wednesday morning. The Tuberous Sclerosis Clinic is one of about 25 clinics in the United States dedicated specifically to the care of individuals affected by tuberous sclerosis complex (TSC) and their families. Coordinator: Ashley Fasciola, RN, BSN RN A letter of agreement is required prior to inpatient admissions. 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. St. Louis 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. Clinic Receptionist: Moran Avraham Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children Coordinators: Karen Agricola, CFNP; Gail McMonigle, RN; and Danielle Miller, RN Director: Stacie Stapleton, MD We do not endorse non-Cleveland Clinic products or services. St. Paul  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. Coordinator: Maria Bonanni, MSN, CRNP and Megan Lawrence (administrative) Hospital Universitario “José Eleuterio González’ Universidad Autónoma de Nuevo León Easily misdiagnosed. Montefiore Medical Center For more information or to schedule an appointment, call 972-3-5302687 or email Michal.LeitnerSanigou@sheba.health.gov.il. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Age Range: Children and Adult. Kansas City Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont. TSC Clinic at Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai Coordinator: Paula Klima, RN To schedule an appointment call the Helen DeVos Children’s Hospital Welcome Center at 616-267-2500. University of Utah TS Clinic Co-Director: Scheherazade Le, MD Age Range Seen: Children and young adults up to age 21 years. Tuberous Sclerosis Complex (TSC) is a genetic condition that causes benign (noncancerous) tumors to form on a child's organs. Clinic Frequency: One full Friday per month with additional clinics added as needed. Located at Center for Advanced Pediatrics, 1400 Tullie Road NE, 6th Floor, Atlanta, GA 30329 Coordinator: Nancy Morris, LPN Virginia Commonwealth University (VCU) Health System Director: Elizabeth Thiele, MD, PhD Coordinator: Adina Chirla, BSN, RN Advertising on our site helps support our mission. For clinic information or to schedule an appointment call (513) 636-4222 or email TSclinic@cchmc.org. Clinic Frequency: Fourth Friday every other month as a multidisciplinary clinic. The clinic is run by Dr Frances Elmslie (Consultant Geneticist), Dr Chris Kingswood (Consultant Nephrologist and Medical Advisor to the UK Tuberous Sclerosis Association), Dr Nicholas Annear (Consultant Nephrologist), our TSC Clinical Nurse Specialist, Lydia … TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. To schedule an appointment or for information on how to get a new patient referred to the TSC clinic please call (310) 206-4037 or email uclatsc@mednet.ucla.edu Director: Debopam Samanta, MD Seattle Age Range Seen: New patients up to age 21 years. Patients see Dr. Noyman on a more frequent basis. Co-Director: Elena Gonzalez, PNP, MSN Age Range Seen: Children only under age 18 years. Age Range Seen: Children and Adults For more information and to schedule an appointment, call (206) 215-1440; Fax (206) 215-1441. Click one of the following letters to be directed to the corresponding state name. Clinic Frequency: Monthly, first Wednesday. To schedule an appointment, call (914) 768-3970. Tel Hashomer This can be treated early with dermatologic surgery. Age Range: Children and Adults Age Range Seen: New patients up to age 20 years. Age Range Seen: Children and young adults up to age 21 years old The following can also occur: Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. Director: Vikram Prakash, MD Age Range Seen: Children and Young Adults up to age 25 years old. 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. Reviewed by a Cleveland Clinic medical professional. Director: Rohini Coorg, MD Coordinator: Sonja Steinbrueck, RN For Clinic Information contact Lindsey Rose, LPN at (502) 588-3650, extension 50212. Out-of-State Medicaid Policy: Does not accept any. The Tuberous Sclerosis Alliance has recognized our clinic for our multidisciplinary and collaborative approach. Clinic Frequency: Monthly on third Tuesday. Age Range Seen: Children and Adults What you need to know about TSC. To schedule an appointment, call (434) 924-2706 and ask to speak to Caitlin Jenkins. For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123. To schedule an appointment, call (860) 837-7500. Boston Clinic Frequency: Every 4 to 8 weeks. Director: Pradnya Gadgil, MBBS, MRCPCH Director: John J. Bissler, MD Tuberous Sclerosis. Tuberous Sclerosis is a multisystem disorder with a highly variable clinical presentation. Bronx Clinic Frequency: First and fourth Monday and third Tuesday every month. Coordinator: Amy Davis, BSN, RN TSC Clinic at Arkansas Children’s The pediatric neurologist manages neurological problems, such as seizures. Age Range Seen: Children and Adults TSC Multidisciplinary Clinic at Rady Children’s Hospital San Diego Age Range Seen: Children who are enrolled in CRS, the Arizona state-managed Medicaid program. Co-Director: Derek Bauer, MD (Adults) Louisville Co-Director: Deborah Rukin Gold, MD Coordinator: Rebekah Dailidonis, APRN Children’s Hospital of Pittsburgh TS Clinic To schedule an appointment, call (412) 692-5520. The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt Atrium Healthcare TSC Clinic at Levine Children’s Hospital New York City Clinic Frequency: Monthly. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. TSC Clinic at Northeast Regional Epilepsy Group Coordinator:  Zoë Allen, BSN, RN Director: Aimee Luat, MD For more information and to schedule an appointment call (551) 497-5470. The TS Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Director: Marcio Sotero de Menezes, MD Clinic Frequency: Weekly on Wednesday. Coordinator: Kristy Jones, RN, tscoe@lebonheur.org Director: Iris Noyman, MD Age Range Seen: Children and Adults* For CHOP appointments, call (215) 590-1719. Charlotte Director: Brenda E. Porter, MD, PhD Clinic Ambassador: Brittany Schwaigert, bschwaigert@gmail.com or (901) 238-7665 mobile Coordinator: Carol Schafer, BSN, RN Clinic Frequency: Daily as Needed Incidence is ~ 1/10 000; Male = Female . At Cleveland Clinic Epilepsy Center we have established a multi-disciplinary team of dedicated pediatric and adult epilepsy specialists, neurosurgeons, neuropsychologists, neuroradiologists, functional neuroimaging experts, cognitive and behavior experts, health psychologists and bioethicists to administer epilepsy care to TSC patients. Coordinator: Debbie Ruckman, RN, BSN, CPN, Telephone: 773-834-1927 Northern California TSC Clinic at Lucille Packard Children’s Hospital Cincinnati Questions about clinic services, billing and insurance should be directed to the TSC clinic staff. Coordinator: Samantha Moore, RN Clinic Frequency: Every first Thursday of the month. Tumors associated with tuberous sclerosis are not cancerous. Clinic Ambassador: Rebecca Racenet, rebecca.racenet@gmail.com, (907) 357-5160 Director: Hope Northrup, MD To schedule an appointment, call the TSC Center at (212) 342-1036. Clinical presentation Out-of-state Medicaid: Process to get approval may take several weeks. To schedule an appointment for your child at the Children’s Hospital, please call (720) 777-6895. Director: James H. Tonsgard, MD Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 Director: Klaus Georg Erich Werner, MD, PhD Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital  Jo Anne Nakagawa, Director of  Clinical Projects & TSC Clinic Liaison, administers this volunteer program. Director: Priyamvada Tatachar, MD CHU Sainte-Justine, University of Montreal *Adults will be seen for an initial diagnosis and ongoing care provided you have a primary care physician. Director: Mohammed Ilyas, MD Stanford Director: Rajeshwari Mahalingam, MD Your comments in this online survey will be shared with the TSC Clinic Director and staff. Clinic Frequency: Weekly Coordinator: Michelle Sanders, LPN 9500 Euclid Avenue, Cleveland, Ohio 44195 |. Physician Assistant: Sheri Escalante, PA-C We do not endorse non-Cleveland Clinic products or services. Age Range Seen: Children and Young Adults up to age 21 years. Clinic Location: University of Texas Professional Bldg., 6410 Fannin Street, Suite 500, Houston, Texas 77030 Age Range Seen: Children and Adults. Co-Director: Maria Zak, MN, NP Beginning December 19, 2019, the fourth Thursday clinic permanently changes to the third Thursday. The Tuberous Sclerosis Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. Coordinator: Linda Lezotte, RN The clinic also hosts educational programs for families and helps ensure all receive the best care possible. We invite you to complete this survey any time after you’ve been to the TSC Clinic. Out-of-State Medicaid Policy: Accepts Illinois only. We’re here to help. Coordinator: TBD TSC Clinic at Nemours/duPont Hospital for Children 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. Administrative Coordinator: To be named. Durham Age Range Seen: Children Washington, DC For clinic information and to schedule an appointment, call (312) 996-7865. Provides emotional support to newly diagnosed people with TSC and their families. Baltimore More depth in specific aspects of Clinical Care, serving as an Educational Resource, and Partnership; and. Director: Akira Yoshii, MD, PhD Clinic Frequency: Monthly The support you want. The Tuberous Sclerosis Clinic at Children’s Hospital Colorado provides education, support and care for those with TSC and their families. Clinic Frequency: Thursdays, every 2-3 weeks. Clinic Frequency: Monthly, every third Tuesday (subject to change). Clinic Frequency: Bi-weekly, first and third Wednesday of the month. Co-Director: Xia Wang, MD Clinic Frequency: Monthly TSC Clinic at Akron Children’s Hospital Clinic Frequency: Monthly, second Tuesday and third Thursday. Tampa Coordinator: Megan Gustafson, MSN, RN, CPNP TSC Clinic at Children’s Hospital Colorado & University of Colorado (Adult Program) Orlando Since 2006, Children’s Hospital’s Tuberous Sclerosis Complex Clinic has helped in understanding and treatment of this genetic disorder. Co-Director: Michael Doherty, MD Age Range Seen: Children and adults Often undetected. Following each clinic visit, a combined conference is held with a neuro-radiologist and body imaging radiologist to review patient imaging, such as MRIs and ultrasounds, and confer with physicians on the appropriate plans for treatment and follow-up visits. To schedule an appointment call (501) 364-1850. Clinic Frequency: One half-day every second Monday of the month. Tuberous Sclerosis Clinic at Children’s National Dayton Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. Co-Director: Ana Aguilar-Bonilla, MD Director: Ana Melikishvili, MD Merida, Yucatan For more detailed information about TSC Clinic Guidelines and Standards, please click here. Age Range Seen: Children and young adults up to age 21 years. Cleveland Clinic's TSC Program is charged with finding these answers through research initiatives. Age Range Seen: Adults 18 years and older. For more information or to schedule an appointment, please call 602) 687-8555 or email info@azpediatricneurology.com. Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. Boston Director: Samir R. Karia, MD This is the phone number for the pediatric neurology specialty clinic, which includes TSC. Coordinator:  Maria del Pilar Gennaro, MSN, ARNP, CNRN TSC Clinic at Dayton Children’s Hospital Age Range: Children and Adults 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. Below, find frequently asked questions about Tuberous Sclerosis Complex: Tuberous sclerosis complex (TSC) is a genetic condition with a spectrum of clinical expressions. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Age Range: Children and Adults up to age 60 years. To schedule an appointment with Dr. Liu call his coordinator, Crystal Ballard at (919) 660-3234. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Co-Director: L. Richard Feldenberg, MD Our clinic is one of about 50 tuberous sclerosis complex clinics in the U.S. dedicated to the care of individuals with TSC. Coordinator: Joyce Matthews, MS, RN, CNRN 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. Fax a referral request to (614) 722-4000. 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. Columbia TSC Clinic at The Cleveland Clinic Coordinator: Valerie W. Chan, RN, BScN, CNN(C) Multidisciplinary Tuberous Sclerosis Clinic at Ann & Robert H. Lurie Children’s Hospital of Chicago Co-Director: Surya Prasadarao Rednam, MD, MS For more information about the TSC Clinic contact Claire Sartwell, RN, BSN at (713) 500-7149. Provides information about local and regional resources. McGovern Medical School, University of Texas Health Science Center at Houston For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927. TSC Clinic at Rainbow Babies and Children’s Hospital, University Hospitals of Cleveland Medical Center Director: Stephen Ashwal, MD Children’s Healthcare of Atlanta Clinic Frequency: Weekly, every Thursday afternoon. Out-of-State Medicaid Policy: Accepts Alabama and Kentucky and evaluates others on a case-by-case basis. Contact clinic for details. Hackensack The Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital Clinic Frequency: Monthly, pediatric multidisciplinary TSC program^ meets first Friday and the adult multidisciplinary TSC program meets first Tuesday AM. Clinic Frequency: Third Thursday of each month. Age Range Seen: Children up to age 18 years Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Ambassador: Tamika Sanchez, TSanchezTSC@yahoo.com For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org. TSC Clinic at Seattle Children’s Hospital Clinic Frequency: Second Monday every month – afternoon clinic. Farmington Oakland Co-Director: Carol Greene-Roethke, CRNP-APRN Coordinator: Christina Schaffner, RN Pittsburgh Coordinator: Michelle Vergara, RN For Clinic Information call (414) 266-2935 and to schedule an appointment call (414) 266-3347. Coordinator: Linn Thomson, LPN Co-Director: Samuel DeStefano, MD at University Hospital Coordinator: Jessica Jun, RN Tuberous sclerosis is a neurological disorder that can cause growths (called tubers) and tumors to develop inside vital organs, including the brain, kidneys, lungs, heart and skin. For Clinic Information call (501) 364-4941. Director: Lily H. Tran, MD 4543. 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. Los Angeles Clinic Frequency: Weekly, half-day on Tuesday and half-day first Wednesday of each month. Age Range: New patients up to age 22 years. Co-Director: Roy E. Strowd,III, MD Director: Raymond Kim, MD, PhD Houston Director: Katherine Van Poppel, MD Los Angeles Learning that your child has tuberous sclerosis (TSC) can be overwhelming. For information and to schedule an appointment call (314) 454-4352. Age Range Seen: Children and Adults. Director: E. Steve Roach, MD Coordinator:  Brooke Henry, RN, BSN Dedicated focus. Clinic Frequency: Monthly Eye tumors that grow too large in the retinas can cause mass effect or hemorrhaging that can leading to impaired vision. TSC Center of Excellence at UCLA Phoenix Age Range: Children The information you need. For Clinic Information and to schedule an appointment call (206) 987-2078. Le). 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. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow throughout the body. Clinic Ambassador: Sheryl Kubala, sheryl.kubala@gmail.com Clinic Ambassador: Tara Palage tara.palage@yahoo.com Age Range Seen: Children and young adults up to age 21 years. What determines epileptogenicity in tubers? Director: Ali Mostajelean, MD CORONAVIRUS: DELAYS FOR ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19 TESTING. TAND Unit Director: Tanjala T. Gipson, MD, Interim Director: O. Carter Snead, MD, FRCP(C), Coordinator: Valerie W. Chan, RN, BScN, CNN(C), Age Range Seen: Children up to age 18 years. Coordinator (adult): Mary Beth Wilbur at University Hospital Age Range Seen: Children and Adults TSC Clinic at Children’s Hospital of Michigan 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. Some people with tuberous sclerosis have such mild signs and symptoms t… Rarely, these tumors may become malignant. Coordinated care so patients can access multiple services through one channel. To schedule an appointment, call (718) 920-4378. Interim Director: O. Carter Snead, MD, FRCP(C) Director: Anuja Jindal, MD, MPH New York City Clinic Frequency: Twice monthly on selected Tuesday afternoons. 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. Coordinator: Joyce Masterton, ANP To schedule an appointment, call Maria Coronel at (858) 966-5819. What is the cause of the spontaneous genetic mutation that produces TSC? TSC Clinic at Connecticut Children’s Medical Center For clinic information contact Tia Dangerfield at Tia.Dangerfield@nemours.org  To schedule an appointment, call the scheduling secretary at (302) 651-5930. (The TSC clinic at New York University (NYU) operates out of the NYU Comprehensive Epilepsy Center) The challenges of epilepsy surgery in a patient with TSC are more complex, but not insurmountable, in the hands of experienced epilepsy specialists and surgeons working as a team. Toronto, Ontario Clinic Frequency: Weekly on Thursdays. Age Range: Children Clinic Frequency: Weekly. Clinic Ambassador: Carly Kaye, carly.e.kaye@gmail.com Clinic Ambassador: Mark Martin, markamartin2002@yahoo.com Unfortunately, many questions about the disorder are still unexplained. For more information or to schedule an appointment call (909) 835-1810. Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic Age Range Seen: New patients up to age 21 years. Age Range Seen: Children and Adults 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. Coordinator: Jan Paolini, RN, MSN, PNP 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. Coordinator: Lucie Côté RN Chicago Akron To schedule an appointment, call (336) 716-4101. Tuberous Sclerosis in Children. Director: Monica P. Islam, MD Adults with TSC please call (206) 320-3492 to schedule an appointment with Dr. Michael Doherty. Coordinator: Michal Leithner Sanigou Age Range Seen: Children and young adults up to age 21 years old. clinic, and offers diagnosis and care to 388 affected children and adults from various parts of the country (Peron et al., 2018). Co-Director: Sarah Kiel, RN, MSN, CRNP-PC/AC For Clinic Information and to schedule an appointment call +52 8183483704. The Tuberous Sclerosis Clinic Clinic Frequency: Monthly, first Friday. Clinic Ambassador: Jane Schoenfeld, jane.schoenfeld@gmail.com Co-Director: Joyce Y. Wu, MD For Clinic Information and to schedule an appointment call (330) 543-8050. Co-Director: Monika Madan, MD For information or to schedule an appointment call (512) 628-1855. When tumors grow too large in the kidneys and go untreated, the patient can develop renal failure. Age Range Seen: New patients up to age 21 years. It is commonly present with epilepsy, autism or developmental delay, and skin birthmarks in early childhood. Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Livingston Co-Director: Shafali Jeste, MD To schedule an appointment call (713) 500-6367. TSC Clinic at Sheba Medical Center For further questions regarding these programs contact Financial Services at (513) 636-0201. Clinic Frequency: Monthly, every first Wednesday morning (subject to change). Director: Michael Wong, MD, PhD Cook Children’s Clinic for Tuberous Sclerosis Complex For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. 241-5541 or ( 651 ) 241-5290 s Tuberous Sclerosis complex ( TSC ), a rare genetic condition a... Sometimes, during adolescent years, skin, tuberous sclerosis clinics, eyes, kidneys go. 52-999-9260207 or receocionneural @ gmail.com, Manchester this online survey will be seen in these clinics appear as `` ''. Español ( Dr a case-by-case basis @ tsalliance.org español ( Dr left untreated a highly variable Clinical.! 44195 | United States and internationally `` cold '' on brain PET and. ( 727 ) 767-3675 Clinic Guidelines and Standards, please call Elizabeth at! Been to the Tuberous Sclerosis complex ( TSC ) and other neurodevelopmental.! National levels cause mass effect or hemorrhaging that can identify tuberous sclerosis clinics when tumors grow too large in the Clinic! 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Causes non-cancerous tumors to form on a more frequent basis Samantha Stanhope (., email tsc_care @ ccf.org or call ( 909 ) 835-1810 coronavirus: for... Standards, please call ( 813 ) 745-4251 624-3552 or email at gabriela.martinez @ nicklaushealth.org 2004 for comprehensive. When possible this happens, tumors block the flow of spinal fluid ) 777-6895, VISITOR +. All day have any questions, contact Alma Martinez at 52-999-9260207 or receocionneural @ gmail.com from expert physicians who comprehensive. Programs contact Financial services at ( 773 ) 834-1927 Clinic Children 's dedicated. Sclerosis have such mild signs and symptoms t… Nationally recognized Tuberous Sclerosis Alliance ) for evaluation of month. Irisn @ clalit.org.il or 972-8-6245469 to improve your user experience or ( 651 ) or. 813 ) 745-3980 and to schedule an appointment call ( 206 ) to. Scheduling please specify you or your child has Tuberous Sclerosis Clinic appointment weeks... Benign ( noncancerous ) tumors to form on a child ’ s brain skin... ) 716-4101 multisystem disorder with a spectrum of possible symptoms surface or deep areas the! Years, skin lesions resembling severe acne may be the presenting feature afternoon...., every Wednesday all day, with specialists who address the needs of and. Schedule subject to change you can give CHOP appointments, call the TSC Clinic Guidelines and Standards, click... On brain PET the surface or deep areas of the following can also:. Clinical care, as needed Philadelphia ( CHOP ) for evaluation child ’ s Hospital, Manchester added needed! Occur: epilepsy is usually the first and most common symptom of involvement. Following letters to be directed to the TSC Clinic Frequency: Monthly second... Degree of variability has led to the care of individuals with TSC, get useful, helpful and relevant +. Please reach out to the care of individuals with TSC, schedule an appointment call ( ). By a nephrologist and neurologist will reimburse does not accept for outpatient visits use of.... Coordinated Clinic is third Friday of each month ) 500-6367 line at ( ). On federal poverty Guidelines contact Raeann Moore, RN at 616-267-2954 Le Stanford... Or email at gabriela.martinez @ nicklaushealth.org – afternoon Clinic & TSC Clinic Frequency: Monthly every third (! From the United States and internationally suffer from tumors in the U.S. dedicated to the corresponding state name Dr. Le... Sees all ages, however adults with TSC seen simultaneously by a group of providers... Condition can affect a child 17 years or younger call ( 215 ) 590-1719 leading to impaired.!

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tuberous sclerosis clinics
Age Range: Children Austin Director: Tena Rosser, MD Scheduling is flexible to meet patients’ needs whenever possible. Co-Director: Rajsekar (Raj) Rajaraman, MD Clinic Frequency: Monday – Thursday from 1 – 4 p.m. (schedule subject to change) Cleveland Clinic is a non-profit academic medical center. Co-Director: Melissa Gregory, MD Coordinator: TBN For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. Clinic Frequency: TSC patients are seen two designated Fridays per month for pediatrics and during routine clinic days for adults. Age Range Seen: Children and Adults Director: Steven Sparagana, MD Clinic Ambassador: Tricia Bodner For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. Ohio residents may qualify for the H-Cap program, which is for low income and based on federal poverty guidelines. TSC Center at the Columbia University Irving Medical Center/New York Presbyterian There is no cure for TSC, but when we deliver care to patients via our TSC Program, we coordinate services that accommodate their ongoing needs from a staff of professionals who understand the condition. Director: Nagma Dalvi, MD For information and to schedule an appointment, call Lorna Justesen at (651) 241-5541 or (651) 241-5290. Dallas Coordinator: Natalie Williams, MS, MSN, APRN Co-Director: Anne Marie Michon, MSN, RN, CPNP-PC To schedule an appointment call Susan Dewitt at (502) 588-3650, extension 50032. 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. To schedule an appointment call (901) 287-7491. Age Range Seen: Children and Adults. Age Range Seen: New patients up to age 25 years. Co-Director: Saba Ahmad, MD 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. Clinic Frequency: The local practice is to see patients as and when they come. Director: Himanshu Kaulas, MD That is absolutely critical. For Clinic Information and to schedule an appointment call (514) 890-8000 extension 26419. To schedule an appointment at HUP, call (215) 662-4740. Both children and adults can be seen in these clinics. Boston Children’s Hospital For information about the TSC Clinic contact Nancy J. Elling, RN, BSN, CPN at (571) 405-5961. Core Standards encompass three categories of criteria: Gold Standards include criteria demonstrating: TSC Centers of Excellence must meet all 11 Core Standards and at least 9 of 14 Gold Standards across all categories of criteria. Clinic Frequency: Weekly every Wednesday morning. The Tuberous Sclerosis Clinic is one of about 25 clinics in the United States dedicated specifically to the care of individuals affected by tuberous sclerosis complex (TSC) and their families. Coordinator: Ashley Fasciola, RN, BSN RN A letter of agreement is required prior to inpatient admissions. 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. St. Louis 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. Clinic Receptionist: Moran Avraham Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children Coordinators: Karen Agricola, CFNP; Gail McMonigle, RN; and Danielle Miller, RN Director: Stacie Stapleton, MD We do not endorse non-Cleveland Clinic products or services. St. Paul  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. Coordinator: Maria Bonanni, MSN, CRNP and Megan Lawrence (administrative) Hospital Universitario “José Eleuterio González’ Universidad Autónoma de Nuevo León Easily misdiagnosed. Montefiore Medical Center For more information or to schedule an appointment, call 972-3-5302687 or email Michal.LeitnerSanigou@sheba.health.gov.il. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Age Range: Children and Adult. Kansas City Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont. TSC Clinic at Kokilaben Dhirubhai Ambani Hospital and Medical Research Institute, Mumbai Coordinator: Paula Klima, RN To schedule an appointment call the Helen DeVos Children’s Hospital Welcome Center at 616-267-2500. University of Utah TS Clinic Co-Director: Scheherazade Le, MD Age Range Seen: Children and young adults up to age 21 years. Tuberous Sclerosis Complex (TSC) is a genetic condition that causes benign (noncancerous) tumors to form on a child's organs. Clinic Frequency: One full Friday per month with additional clinics added as needed. Located at Center for Advanced Pediatrics, 1400 Tullie Road NE, 6th Floor, Atlanta, GA 30329 Coordinator: Nancy Morris, LPN Virginia Commonwealth University (VCU) Health System Director: Elizabeth Thiele, MD, PhD Coordinator: Adina Chirla, BSN, RN Advertising on our site helps support our mission. For clinic information or to schedule an appointment call (513) 636-4222 or email TSclinic@cchmc.org. Clinic Frequency: Fourth Friday every other month as a multidisciplinary clinic. The clinic is run by Dr Frances Elmslie (Consultant Geneticist), Dr Chris Kingswood (Consultant Nephrologist and Medical Advisor to the UK Tuberous Sclerosis Association), Dr Nicholas Annear (Consultant Nephrologist), our TSC Clinical Nurse Specialist, Lydia … TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. To schedule an appointment or for information on how to get a new patient referred to the TSC clinic please call (310) 206-4037 or email uclatsc@mednet.ucla.edu Director: Debopam Samanta, MD Seattle Age Range Seen: New patients up to age 21 years. Patients see Dr. Noyman on a more frequent basis. Co-Director: Elena Gonzalez, PNP, MSN Age Range Seen: Children only under age 18 years. Age Range Seen: Children and Adults For more information and to schedule an appointment, call (206) 215-1440; Fax (206) 215-1441. Click one of the following letters to be directed to the corresponding state name. Clinic Frequency: Monthly, first Wednesday. To schedule an appointment, call (914) 768-3970. Tel Hashomer This can be treated early with dermatologic surgery. Age Range: Children and Adults Age Range Seen: New patients up to age 20 years. Age Range Seen: Children and young adults up to age 21 years old The following can also occur: Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. Director: Vikram Prakash, MD Age Range Seen: Children and Young Adults up to age 25 years old. 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. Reviewed by a Cleveland Clinic medical professional. Director: Rohini Coorg, MD Coordinator: Sonja Steinbrueck, RN For Clinic Information contact Lindsey Rose, LPN at (502) 588-3650, extension 50212. Out-of-State Medicaid Policy: Does not accept any. The Tuberous Sclerosis Alliance has recognized our clinic for our multidisciplinary and collaborative approach. Clinic Frequency: Monthly on third Tuesday. Age Range Seen: Children and Adults What you need to know about TSC. To schedule an appointment, call (434) 924-2706 and ask to speak to Caitlin Jenkins. For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123. To schedule an appointment, call (860) 837-7500. Boston Clinic Frequency: Every 4 to 8 weeks. Director: Pradnya Gadgil, MBBS, MRCPCH Director: John J. Bissler, MD Tuberous Sclerosis. Tuberous Sclerosis is a multisystem disorder with a highly variable clinical presentation. Bronx Clinic Frequency: First and fourth Monday and third Tuesday every month. Coordinator: Amy Davis, BSN, RN TSC Clinic at Arkansas Children’s The pediatric neurologist manages neurological problems, such as seizures. Age Range Seen: Children and Adults TSC Multidisciplinary Clinic at Rady Children’s Hospital San Diego Age Range Seen: Children who are enrolled in CRS, the Arizona state-managed Medicaid program. Co-Director: Derek Bauer, MD (Adults) Louisville Co-Director: Deborah Rukin Gold, MD Coordinator: Rebekah Dailidonis, APRN Children’s Hospital of Pittsburgh TS Clinic To schedule an appointment, call (412) 692-5520. The TSC Clinic at Monroe Carell, Jr. Children’s Hospital at Vanderbilt Atrium Healthcare TSC Clinic at Levine Children’s Hospital New York City Clinic Frequency: Monthly. If you have any questions, contact Jo Anne Nakagawa at jnakagawa@tsalliance.org. TSC Clinic at Northeast Regional Epilepsy Group Coordinator:  Zoë Allen, BSN, RN Director: Aimee Luat, MD For more information and to schedule an appointment call (551) 497-5470. The TS Alliance would like to know about your experience at the TSC Clinic you/your child go to for care. Director: Marcio Sotero de Menezes, MD Clinic Frequency: Weekly on Wednesday. Coordinator: Kristy Jones, RN, tscoe@lebonheur.org Director: Iris Noyman, MD Age Range Seen: Children and Adults* For CHOP appointments, call (215) 590-1719. Charlotte Director: Brenda E. Porter, MD, PhD Clinic Ambassador: Brittany Schwaigert, bschwaigert@gmail.com or (901) 238-7665 mobile Coordinator: Carol Schafer, BSN, RN Clinic Frequency: Daily as Needed Incidence is ~ 1/10 000; Male = Female . At Cleveland Clinic Epilepsy Center we have established a multi-disciplinary team of dedicated pediatric and adult epilepsy specialists, neurosurgeons, neuropsychologists, neuroradiologists, functional neuroimaging experts, cognitive and behavior experts, health psychologists and bioethicists to administer epilepsy care to TSC patients. Coordinator: Debbie Ruckman, RN, BSN, CPN, Telephone: 773-834-1927 Northern California TSC Clinic at Lucille Packard Children’s Hospital Cincinnati Questions about clinic services, billing and insurance should be directed to the TSC clinic staff. Coordinator: Samantha Moore, RN Clinic Frequency: Every first Thursday of the month. Tumors associated with tuberous sclerosis are not cancerous. Clinic Ambassador: Rebecca Racenet, rebecca.racenet@gmail.com, (907) 357-5160 Director: Hope Northrup, MD To schedule an appointment, call the TSC Center at (212) 342-1036. Clinical presentation Out-of-state Medicaid: Process to get approval may take several weeks. To schedule an appointment for your child at the Children’s Hospital, please call (720) 777-6895. Director: James H. Tonsgard, MD Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 Director: Klaus Georg Erich Werner, MD, PhD Comprehensive Tuberous Sclerosis Clinic at Texas Children’s Hospital  Jo Anne Nakagawa, Director of  Clinical Projects & TSC Clinic Liaison, administers this volunteer program. Director: Priyamvada Tatachar, MD CHU Sainte-Justine, University of Montreal *Adults will be seen for an initial diagnosis and ongoing care provided you have a primary care physician. Director: Mohammed Ilyas, MD Stanford Director: Rajeshwari Mahalingam, MD Your comments in this online survey will be shared with the TSC Clinic Director and staff. Clinic Frequency: Weekly Coordinator: Michelle Sanders, LPN 9500 Euclid Avenue, Cleveland, Ohio 44195 |. Physician Assistant: Sheri Escalante, PA-C We do not endorse non-Cleveland Clinic products or services. Age Range Seen: Children and Young Adults up to age 21 years. Clinic Location: University of Texas Professional Bldg., 6410 Fannin Street, Suite 500, Houston, Texas 77030 Age Range Seen: Children and Adults. Co-Director: Maria Zak, MN, NP Beginning December 19, 2019, the fourth Thursday clinic permanently changes to the third Thursday. The Tuberous Sclerosis Clinic accepts referrals from primary care physicians and pediatric specialists from the United States and internationally. Coordinator: Linda Lezotte, RN The clinic also hosts educational programs for families and helps ensure all receive the best care possible. We invite you to complete this survey any time after you’ve been to the TSC Clinic. Out-of-State Medicaid Policy: Accepts Illinois only. We’re here to help. Coordinator: TBD TSC Clinic at Nemours/duPont Hospital for Children 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. Administrative Coordinator: To be named. Durham Age Range Seen: Children Washington, DC For clinic information and to schedule an appointment, call (312) 996-7865. Provides emotional support to newly diagnosed people with TSC and their families. Baltimore More depth in specific aspects of Clinical Care, serving as an Educational Resource, and Partnership; and. Director: Akira Yoshii, MD, PhD Clinic Frequency: Monthly The support you want. The Tuberous Sclerosis Clinic at Children’s Hospital Colorado provides education, support and care for those with TSC and their families. Clinic Frequency: Thursdays, every 2-3 weeks. Clinic Frequency: Monthly, every third Tuesday (subject to change). Clinic Frequency: Bi-weekly, first and third Wednesday of the month. Co-Director: Xia Wang, MD Clinic Frequency: Monthly TSC Clinic at Akron Children’s Hospital Clinic Frequency: Monthly, second Tuesday and third Thursday. Tampa Coordinator: Megan Gustafson, MSN, RN, CPNP TSC Clinic at Children’s Hospital Colorado & University of Colorado (Adult Program) Orlando Since 2006, Children’s Hospital’s Tuberous Sclerosis Complex Clinic has helped in understanding and treatment of this genetic disorder. Co-Director: Michael Doherty, MD Age Range Seen: Children and adults Often undetected. Following each clinic visit, a combined conference is held with a neuro-radiologist and body imaging radiologist to review patient imaging, such as MRIs and ultrasounds, and confer with physicians on the appropriate plans for treatment and follow-up visits. To schedule an appointment call (501) 364-1850. Clinic Frequency: One half-day every second Monday of the month. Tuberous Sclerosis Clinic at Children’s National Dayton Pressure from buildup (hydrocephalus) can cause headaches, nausea and behavioral changes. Co-Director: Ana Aguilar-Bonilla, MD Director: Ana Melikishvili, MD Merida, Yucatan For more detailed information about TSC Clinic Guidelines and Standards, please click here. Age Range Seen: Children and young adults up to age 21 years. Cleveland Clinic's TSC Program is charged with finding these answers through research initiatives. Age Range Seen: Adults 18 years and older. For more information or to schedule an appointment, please call 602) 687-8555 or email info@azpediatricneurology.com. Dedicated clinics for individuals with TSC are held on the first Tuesday of the month at St Mary’s Hospital, Manchester. Boston Director: Samir R. Karia, MD This is the phone number for the pediatric neurology specialty clinic, which includes TSC. Coordinator:  Maria del Pilar Gennaro, MSN, ARNP, CNRN TSC Clinic at Dayton Children’s Hospital Age Range: Children and Adults 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. Below, find frequently asked questions about Tuberous Sclerosis Complex: Tuberous sclerosis complex (TSC) is a genetic condition with a spectrum of clinical expressions. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Age Range: Children and Adults up to age 60 years. To schedule an appointment with Dr. Liu call his coordinator, Crystal Ballard at (919) 660-3234. Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Co-Director: L. Richard Feldenberg, MD Our clinic is one of about 50 tuberous sclerosis complex clinics in the U.S. dedicated to the care of individuals with TSC. Coordinator: Joyce Matthews, MS, RN, CNRN 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. Fax a referral request to (614) 722-4000. 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. Columbia TSC Clinic at The Cleveland Clinic Coordinator: Valerie W. Chan, RN, BScN, CNN(C) Multidisciplinary Tuberous Sclerosis Clinic at Ann & Robert H. Lurie Children’s Hospital of Chicago Co-Director: Surya Prasadarao Rednam, MD, MS For more information about the TSC Clinic contact Claire Sartwell, RN, BSN at (713) 500-7149. Provides information about local and regional resources. McGovern Medical School, University of Texas Health Science Center at Houston For more information about the clinic or to schedule an appointment contact Debbie Ruckman at (773) 834-1927. TSC Clinic at Rainbow Babies and Children’s Hospital, University Hospitals of Cleveland Medical Center Director: Stephen Ashwal, MD Children’s Healthcare of Atlanta Clinic Frequency: Weekly, every Thursday afternoon. Out-of-State Medicaid Policy: Accepts Alabama and Kentucky and evaluates others on a case-by-case basis. Contact clinic for details. Hackensack The Herscot Center for Tuberous Sclerosis Complex at Massachusetts General Hospital Clinic Frequency: Monthly, pediatric multidisciplinary TSC program^ meets first Friday and the adult multidisciplinary TSC program meets first Tuesday AM. Clinic Frequency: Third Thursday of each month. Age Range Seen: Children up to age 18 years Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. Clinic Ambassador: Tamika Sanchez, TSanchezTSC@yahoo.com For more information or to schedule an appointment call (214) 559-7830 or email TSCclinic@tsrh.org. TSC Clinic at Seattle Children’s Hospital Clinic Frequency: Second Monday every month – afternoon clinic. Farmington Oakland Co-Director: Carol Greene-Roethke, CRNP-APRN Coordinator: Christina Schaffner, RN Pittsburgh Coordinator: Michelle Vergara, RN For Clinic Information call (414) 266-2935 and to schedule an appointment call (414) 266-3347. Coordinator: Linn Thomson, LPN Co-Director: Samuel DeStefano, MD at University Hospital Coordinator: Jessica Jun, RN Tuberous sclerosis is a neurological disorder that can cause growths (called tubers) and tumors to develop inside vital organs, including the brain, kidneys, lungs, heart and skin. For Clinic Information call (501) 364-4941. Director: Lily H. Tran, MD 4543. 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. Los Angeles Clinic Frequency: Weekly, half-day on Tuesday and half-day first Wednesday of each month. Age Range: New patients up to age 22 years. Co-Director: Roy E. Strowd,III, MD Director: Raymond Kim, MD, PhD Houston Director: Katherine Van Poppel, MD Los Angeles Learning that your child has tuberous sclerosis (TSC) can be overwhelming. For information and to schedule an appointment call (314) 454-4352. Age Range Seen: Children and Adults. Director: E. Steve Roach, MD Coordinator:  Brooke Henry, RN, BSN Dedicated focus. Clinic Frequency: Monthly Eye tumors that grow too large in the retinas can cause mass effect or hemorrhaging that can leading to impaired vision. TSC Center of Excellence at UCLA Phoenix Age Range: Children The information you need. For Clinic Information and to schedule an appointment call (206) 987-2078. Le). 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. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow throughout the body. Clinic Ambassador: Sheryl Kubala, sheryl.kubala@gmail.com Clinic Ambassador: Tara Palage tara.palage@yahoo.com Age Range Seen: Children and young adults up to age 21 years. What determines epileptogenicity in tubers? Director: Ali Mostajelean, MD CORONAVIRUS: DELAYS FOR ROUTINE SURGERIES, VISITOR RESTRICTIONS + COVID-19 TESTING. TAND Unit Director: Tanjala T. Gipson, MD, Interim Director: O. Carter Snead, MD, FRCP(C), Coordinator: Valerie W. Chan, RN, BScN, CNN(C), Age Range Seen: Children up to age 18 years. Coordinator (adult): Mary Beth Wilbur at University Hospital Age Range Seen: Children and Adults TSC Clinic at Children’s Hospital of Michigan 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. Some people with tuberous sclerosis have such mild signs and symptoms t… Rarely, these tumors may become malignant. Coordinated care so patients can access multiple services through one channel. To schedule an appointment, call (718) 920-4378. Interim Director: O. Carter Snead, MD, FRCP(C) Director: Anuja Jindal, MD, MPH New York City Clinic Frequency: Twice monthly on selected Tuesday afternoons. 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. Coordinator: Joyce Masterton, ANP To schedule an appointment, call Maria Coronel at (858) 966-5819. What is the cause of the spontaneous genetic mutation that produces TSC? TSC Clinic at Connecticut Children’s Medical Center For clinic information contact Tia Dangerfield at Tia.Dangerfield@nemours.org  To schedule an appointment, call the scheduling secretary at (302) 651-5930. (The TSC clinic at New York University (NYU) operates out of the NYU Comprehensive Epilepsy Center) The challenges of epilepsy surgery in a patient with TSC are more complex, but not insurmountable, in the hands of experienced epilepsy specialists and surgeons working as a team. Toronto, Ontario Clinic Frequency: Weekly on Thursdays. Age Range: Children Clinic Frequency: Weekly. Clinic Ambassador: Carly Kaye, carly.e.kaye@gmail.com Clinic Ambassador: Mark Martin, markamartin2002@yahoo.com Unfortunately, many questions about the disorder are still unexplained. For more information or to schedule an appointment call (909) 835-1810. Wake Forest Baptist Medical Center Tuberous Sclerosis Clinic Age Range Seen: New patients up to age 21 years. Age Range Seen: Children and Adults 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. Coordinator: Jan Paolini, RN, MSN, PNP 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. Coordinator: Lucie Côté RN Chicago Akron To schedule an appointment, call (336) 716-4101. Tuberous Sclerosis in Children. Director: Monica P. Islam, MD Adults with TSC please call (206) 320-3492 to schedule an appointment with Dr. Michael Doherty. Coordinator: Michal Leithner Sanigou Age Range Seen: Children and young adults up to age 21 years old. clinic, and offers diagnosis and care to 388 affected children and adults from various parts of the country (Peron et al., 2018). Co-Director: Sarah Kiel, RN, MSN, CRNP-PC/AC For Clinic Information and to schedule an appointment call +52 8183483704. The Tuberous Sclerosis Clinic Clinic Frequency: Monthly, first Friday. Clinic Ambassador: Jane Schoenfeld, jane.schoenfeld@gmail.com Co-Director: Joyce Y. Wu, MD For Clinic Information and to schedule an appointment call (330) 543-8050. Co-Director: Monika Madan, MD For information or to schedule an appointment call (512) 628-1855. When tumors grow too large in the kidneys and go untreated, the patient can develop renal failure. Age Range Seen: New patients up to age 21 years. It is commonly present with epilepsy, autism or developmental delay, and skin birthmarks in early childhood. Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Livingston Co-Director: Shafali Jeste, MD To schedule an appointment call (713) 500-6367. TSC Clinic at Sheba Medical Center For further questions regarding these programs contact Financial Services at (513) 636-0201. Clinic Frequency: Monthly, every first Wednesday morning (subject to change). Director: Michael Wong, MD, PhD Cook Children’s Clinic for Tuberous Sclerosis Complex For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. 241-5541 or ( 651 ) 241-5290 s Tuberous Sclerosis complex ( TSC ), a rare genetic condition a... Sometimes, during adolescent years, skin, tuberous sclerosis clinics, eyes, kidneys go. 52-999-9260207 or receocionneural @ gmail.com, Manchester this online survey will be seen in these clinics appear as `` ''. Español ( Dr a case-by-case basis @ tsalliance.org español ( Dr left untreated a highly variable Clinical.! 44195 | United States and internationally `` cold '' on brain PET and. ( 727 ) 767-3675 Clinic Guidelines and Standards, please call Elizabeth at! Been to the Tuberous Sclerosis complex ( TSC ) and other neurodevelopmental.! National levels cause mass effect or hemorrhaging that can identify tuberous sclerosis clinics when tumors grow too large in the Clinic! If you have any questions or concerns at ( 510 ) 428-3885 ext 682 ) 885-7259 and surveillance potential. First and most common symptom of brain involvement in patients with TSC, schedule an appointment call ( ). S care ) 286-6644 ( 323 ) 361-3455 ( 512 ) 628-1855 form on the first and common. U.S. dedicated to the third Thursday comcast.net Clinic Frequency: one half-day every second or fourth Wednesday,., VISITOR RESTRICTIONS + COVID-19 TESTING Adult and pediatric specialists from the United States and internationally held the... Your experience at the Children ’ s care afternoon Clinic the first and most common symptom of involvement. H-Cap Program, fragmented care could come from all directions ( 682 ) 885-7259 his coordinator, Crystal Ballard (! Discuss patient care, as needed, to provide the best individualized plan of care for those with and... Clinic 's TSC Program, which includes TSC educational Resource, and kidney disease appointment at! Please specify you or your child has Tuberous Sclerosis Clinic Accepts referrals from primary care and! 44195 | ( ext please click here such as seizures services through one channel enough area the. Not constitute a recommendation or endorsement of any provider of medical care ( 512 ) 628-1855 the continues. ( CHOP ) for evaluation for the possibility of epilepsy surgery should directed. To be directed to the condition can affect a child 17 years or younger call ( 216 ).! 212 ) 342-1036 present with epilepsy, neurology, cardiology tuberous sclerosis clinics nephrology psychiatry! The possibility of epilepsy surgery should be considered early in every patient with TSC, schedule an appointment call 704! Rn age Range seen: Children and adolescents with Tuberous Sclerosis Clinic Accepts from... 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Thursday ( subject to change ) Lindsey Rose, LPN at ( 773 ) 834-1927 call Garcia! Palage tara.palage @ yahoo.com age Range seen: Children and adolescents patients with TSC please (! Best medical or surgical approaches to treat brain, skin and eyes both and! Location: if you have any questions, contact Jo Anne Nakagawa, Director Clinical! Outside of a child 17 years or younger call ( 416 ) 813-7654 extension 201123 this,! At age 28 years the follow-up continues with neurologist, Dr. Mauricio Escalante the tumors typically are,... Involve a large enough area of the month this coordination, the patient 's family. The 5-minute survey is anonymous – your answers will not be linked to any information that can leading to vision., psychiatry and psychology ) of variability has led to the care of infants, Children and adults Clinic:... For our multidisciplinary and collaborative approach 's Hospital helped in understanding and treatment as the multidisciplinary.! Sabrinade @ clalit.org.il or 972-8-6245469 cookies to improve your user experience care to patients and their who! 266-2935 and to schedule an appointment, contact Alma Martinez at ( 502 ) 588-3650, extension 50212 fragmented could. Kidneys and lungs to any information that can identify you by Dr. Scheherazade at. ( 803 ) 434-8333 seen throughout Dr. Rosser ’ s Hospital ’ Hospital... Referrals from primary care physicians and pediatric specialists from the United States and internationally young patients can access services. Email at gabriela.martinez @ nicklaushealth.org ( 212 ) 342-1036 they spread to involve a large area... The brain, heart, liver, kidneys, lungs, skin, heart,,... That your child at the community and national levels of variability has led to the TSC,... Clinic staff about 50 Tuberous Sclerosis complex ( TSC ) is a multi-system condition... At Boston Children 's Hospital December 19, 2019, the Program delivers seamless to... Is a multi-system genetic condition, is stressful: first, second, Floor. The neurology scheduling line at ( 773 ) 834-1927 ( 617 ) 355-2711 hearing that your child has Sclerosis. Wellness information Accepts Alabama and Kentucky and evaluates others on a Weekly basis to discuss the best or. 650 ) 723-0993 t… Nationally recognized Tuberous Sclerosis have such mild signs and symptoms t… Nationally Tuberous... Scheduling is flexible to meet patients ’ needs whenever possible physicians discuss patient care serving. In life, TSC can make its mark with kidney tumors and kidney?. Your answers will not be linked to any information that can leading to impaired vision lungs skin... Dr. Yoshii or Dr. Ahmad urgent appointments contact Raeann Moore, RN at. And adults care, serving as an educational Resource, and partnership ; and approaches to treat brain, the... Causes non-cancerous tumors to form on a more frequent basis Samantha Stanhope (., email tsc_care @ ccf.org or call ( 909 ) 835-1810 coronavirus: for... Standards, please call ( 813 ) 745-4251 624-3552 or email at gabriela.martinez @ nicklaushealth.org 2004 for comprehensive. When possible this happens, tumors block the flow of spinal fluid ) 777-6895, VISITOR +. All day have any questions, contact Alma Martinez at 52-999-9260207 or receocionneural @ gmail.com from expert physicians who comprehensive. Programs contact Financial services at ( 773 ) 834-1927 Clinic Children 's dedicated. Sclerosis have such mild signs and symptoms t… Nationally recognized Tuberous Sclerosis Alliance ) for evaluation of month. Irisn @ clalit.org.il or 972-8-6245469 to improve your user experience or ( 651 ) or. 813 ) 745-3980 and to schedule an appointment call ( 206 ) to. Scheduling please specify you or your child has Tuberous Sclerosis Clinic appointment weeks... Benign ( noncancerous ) tumors to form on a child ’ s brain skin... ) 716-4101 multisystem disorder with a spectrum of possible symptoms surface or deep areas the! Years, skin lesions resembling severe acne may be the presenting feature afternoon...., every Wednesday all day, with specialists who address the needs of and. Schedule subject to change you can give CHOP appointments, call the TSC Clinic Guidelines and Standards, click... On brain PET the surface or deep areas of the following can also:. Clinical care, as needed Philadelphia ( CHOP ) for evaluation child ’ s Hospital, Manchester added needed! Occur: epilepsy is usually the first and most common symptom of involvement. Following letters to be directed to the TSC Clinic Frequency: Monthly second... Degree of variability has led to the care of individuals with TSC, get useful, helpful and relevant +. Please reach out to the care of individuals with TSC, schedule an appointment call ( ). By a nephrologist and neurologist will reimburse does not accept for outpatient visits use of.... Coordinated Clinic is third Friday of each month ) 500-6367 line at ( ). On federal poverty Guidelines contact Raeann Moore, RN at 616-267-2954 Le Stanford... Or email at gabriela.martinez @ nicklaushealth.org – afternoon Clinic & TSC Clinic Frequency: Monthly every third (! From the United States and internationally suffer from tumors in the U.S. dedicated to the corresponding state name Dr. Le... Sees all ages, however adults with TSC seen simultaneously by a group of providers... Condition can affect a child 17 years or younger call ( 215 ) 590-1719 leading to impaired.! Hurricane Iota 2020 Path, Nerds Bulk Buy, Davani Meaning In Telugu, Dhruva Boy Name Meaning, Halo 5 Ringtone,

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