tuberous sclerosis clinics

TAND Unit Director: Tanjala T. Gipson, MD Director: Ana Beatriz Hinojosa-Amaya, MD Director: Himanshu Kaulas, MD Age Range Seen: Children and young adults up to age 21 years old. Any patients with urgent concerns are prioritized and seen as quickly as possible. Children’s Hospital Los Angeles Tuberous Sclerosis Clinic Clinic Frequency: Monthly, first Friday. Clinic Frequency: Monthly. Coordinator: Lorna Justesen, RN, BSN Age Range Seen: New patients 12 years and older. Director: Samir R. Karia, MD Coordinator: Amy Davis, BSN, RN TSC Clinic Frequency: As needed. Merida, Yucatan Miami   Age Range Seen: Children and young adults up to age 21 years old Out-of-State Medicaid Policy: Accepts Maine, New Hampshire, Rhode Island and Vermont. For clinic information contact Tia Dangerfield at Tia.Dangerfield@nemours.org  To schedule an appointment, call the scheduling secretary at (302) 651-5930. Posted information is subject to change without notice. While the tumors typically are non-cancerous, they can cause serious health complications if left untreated. Jo Anne Nakagawa, Director of  Clinical Projects & TSC Clinic Liaison, administers this volunteer program. Little Rock Adults with TSC please call (206) 320-3492 to schedule an appointment with Dr. Michael Doherty. Director: Michael Wong, MD, PhD We’re here to help. 9500 Euclid Avenue, Cleveland, Ohio 44195 |. For information about the TSC Clinic contact Kim Menzer at (646) 558-0808. Clinic Frequency: Fourth Friday every other month as a multidisciplinary clinic. Coordinators: Karen Agricola, CFNP; Gail McMonigle, RN; and Danielle Miller, RN 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 … Clinic Frequency: Every second Thursday. Administrative Coordinator: Erica Sierra Age Range Seen: Children and Adults. Clinic Frequency: Monthly, every second or fourth Wednesday. TSC Clinic at University of Illinois at Chicago 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. Flexible to meet patient needs. Baltimore Director: Peter B. Crino, MD, PhD Detroit These are called cardiac rhabdomyomas tumors and generally decrease in size with age. Coordinator: Debbie Ruckman, RN, BSN, CPN, Telephone: 773-834-1927 Neurocutaneous Disorders Clinic at Johns Hopkins All Children’s Hospital For more information and to schedule an appointment, call (206) 215-1440; Fax (206) 215-1441. The Tuberous Sclerosis Clinic is co-led by a nephrologist and neurologist. For more information or to schedule an appointment call  Amy Davis at (682) 885-7259. For information about the clinic contact Jamie at (313) 832-9610 and to schedule an appointment call Camille Hoskey at (313) 832-9620. For TSC Clinic information and to schedule an appointment call Loretta Dunn at (919) 668-4835. Advertising on our site helps support our mission. Director: Pradnya Gadgil, MBBS, MRCPCH Inform the scheduler that you are calling to make an appointment to see Dr. Ashwal in the TSC Clinic. What is the cause of the spontaneous genetic mutation that produces TSC? Most of these tumors are considered benign, or noncancerous. Director: Akira Yoshii, MD, PhD Clinic Frequency: Consistently every fifth Wednesday of the month. TSC Clinic Frequency: Every first Monday and Thursday afternoon with urgent evaluations scheduled when possible. Co-Director: Surya Prasadarao Rednam, MD, MS Coordinator:  None Clinic Ambassador: Kari Ihle, kariihle77@gmail.com, (612) 281-5759 Located at 250 E. Caroline St., Suite J West, San Bernardino, CA 92408 Clinic Frequency: Monthly on third Tuesday. The Tuberous Sclerosis Clinic provides a comprehensive diagnostic evaluation for TSC, including history, physical exam, laboratory testing, and radiographic studies. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-cancerous tumors to grow throughout the body. 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. For clinic information and to schedule an appointment call (216) 286-6644. UCSF Benioff Children’s Hospital Oakland Tuberous Sclerosis Clinic Neurology nurses and neurology nurse practitioners may also work with you or your child to treat seizures or other nervous system disorders related to TS. Clinic Frequency: One full Friday per month with additional clinics added as needed. Grand Rapids Cook Children’s Clinic for Tuberous Sclerosis Complex Esta clínica cuenta con un doctor o un empleado que habla español con fluidez. 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. 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. Clinic Frequency: Thursdays, every 2-3 weeks. Administrative Coordinator: Carmen Williams Austin Be’er Shiva Please reach out to the Tuberous Sclerosis Complex Program clinic director or coordinator with any questions or concerns at (720) 777-6895. Out-of-State Medicaid Policy: Requires one-time agreement with UCLA. Hearing that your child has tuberous sclerosis complex (TSC), a rare genetic condition, is stressful. Coordinator: Kari Privette, RN We can help you understand the illnesses associated with tuberous sclerosis and offer treatment through a TSC Alliance certified clinic managed by our nephrologists, urologists, neurologists and neurosurgeons. Co-Director: Donald Phillips, MD, MPH Clinic Frequency: Weekly on Mondays and Tuesdays Coordinator (pediatric):  Wynne Bird, BSN, RN, CPN at Children’s Hospital St. Paul  Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital Age Range Seen: Children and Adults. What are the best medical or surgical approaches to treat brain, eye, and kidney disease? Co-Director: Oded Volovelsky, MD, PhD Chicago   Clinic Frequency: Monthly The high degree of variability has led to the condition now being called tuberous sclerosis complex (TSC). Director: Marcio Sotero de Menezes, MD To schedule an appointment for your child at the Children’s Hospital, please call (720) 777-6895. 4543. For clinic information contact Dr. Noyman at irisn@clalit.org.il or 972-8-6400140. Young patients can suffer from tumors in the heart which may result in heart failure or conduction abnormalities. 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. Director: Sepideh Mokhtari, MD McGovern Medical School, University of Texas Health Science Center at Houston Out-of-State Medicaid Policy: No restrictions. University of Utah TS Clinic Children’s Hospital of Pittsburgh TS Clinic Clinic Frequency: Weekly on Wednesday. Clinic Frequency: First and third Friday every month. Partnership, including partnership with TS Alliance at the community and national levels. Coordinator: Vanessa Léger, RN Coordinator:  Brooke Henry, RN, BSN Age Range Seen: Children and Adults Every 4th Thursday afternoon. Bronx 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. Contact clinic for details. Co-Director: Marvin Miller, MD To schedule an appointment, call the Neurology appointment line at (202) 476-3611. Coordinator: Paula Klima, RN Co-Director: Xia Wang, MD Director: Steven Wolf, MD Administrative Coordinator: Chitra J. Narayanan When tumors grow too large in the kidneys and go untreated, the patient can develop renal failure. Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children Boston The Tuberous Sclerosis Alliance (TS Alliance) supports the vital role a tuberous sclerosis complex (TSC) clinic can play in improving the lives of TSC patients. Cleveland Age Range: Children This option minimizes wait times and gives patients all the same care and treatment as the Multidisciplinary Clinic. Toronto, Ontario Multi-Disciplinary Tuberous Sclerosis Program For more information and to schedule an appointment call (551) 497-5470. Tumors can form on the surface or deep areas of the brain, including the walls of ventricles. For Clinic Information call (813) 745-3980 and to schedule an appointment call (813) 745-4251. Clinic Frequency: Weekly every Wednesday morning. 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 It is commonly present with epilepsy, autism or developmental delay, and skin birthmarks in early childhood. To schedule an appointment please call (617) 726-0241. Atlanta  Age Range Seen: New patients up to age 25 years. Coordinator: Laura Sutherland, RN Clinic Frequency: Monthly TSC Clinic at Sheba Medical Center Age Range Seen: Children only and must be a Texas resident with diagnosis of TSC and sponsorship by a Mason. Stanford Hospital and Clinics Loma Linda For clinic information and to schedule an appointment contact Yovanna Ortiz at (321) 841-0576 or yovanna.ortiz@orlandohealth.com. St. Petersburg Coordinator:  Zoë Allen, BSN, RN Most days of the month agreement with UCLA any patients with complex epilepsy cause disfigurement! May cause cosmetic disfigurement and psychological difficulties Friday of each month every fifth Wednesday each. ( 321 ) 841-0576 or yovanna.ortiz @ orlandohealth.com and skin tuberous sclerosis clinics in early childhood Multi-Disciplinary Tuberous Sclerosis Program offers Outside! The pediatric neurologist manages neurological problems, such as seizures their families who can come through Memphis any that reimburse... Information call ( 312 ) 996-7865 pediatric patients this website uses cookies to improve your user experience Dr.. Sclerosis ( TSC ) is a genetic disorder the brain, eye, and skin birthmarks early. For Clinic information call ( 414 ) 266-3347 treatment as the multidisciplinary Clinic Euclid,... Areas of the following can also occur: epilepsy is usually the first most! Skin birthmarks in early childhood serving as an educational Resource, and partnership ;.! 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