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World-Wide TSC Organizations 

TSC International Website 

General TSC-Related Information

Living with TSC - Multimedia resource from Massachusetts General Hospital
GeneClinics – Tuberous Sclerosis
National Institute of Neurological Disorders and Stroke: Tuberous Sclerosis
The Rothberg Institute for Childhood Diseases
mTOR Signaling Pathway & mTOR Inhibition Resource
Facing TSC 


American Society of Human Genetics
DNA From the Beginning
Genetic Alliance

Genetics Home Reference: Your Guide to Understanding Genetic Conditions


Brain Tumor Resource Guide
Child Neurology Society

Hemispherectomy Foundation 
National Institute of Child Health and Human Development Brain and Tissue Bank Family Website 
National Institute of Neurological Disorders and Stroke 
Neurosurgery at Massachusetts General Hospital/Harvard 
Society for Neuroscience
Washington School of Medicine
Department of Neurology


American Epilepsy Society
(medical devices for epilepsy) 
Centers for Disease Control and Prevention Epilepsy Resources  
Edmonton Epilepsy Association
Epilepsy Foundation of America
Epilepsy Center at Wake Forest University Baptist Medical Center 
Epilepsy Life Links (support services through the Northeast Regional Epilepsy Group, Hackensack, NJ)  
Epilepsy Ontario
Epilepsy Therapy Project 
EYC: The Spot for Young People with Epilepsy 
HERO: Human Epilepsy Reseach Opportunities (find and enroll in clinical studies and advance epilepsy research.
General Information on Epilepsy (
International Bureau for Epilepsy

Journal of the International League Against Epilepsy

Lundbeck's Support, Help and Resources for Epilepsy (SHARE)
Seizures – by Robert J. Doman, M.D.
Seizure Tracker (online tool to log and track seizure activity, appointments, and medication schedules)
NYU Comprehensive Epilepsy Center
The EpiCentre 
UnderSTANDING Together -- Lundbeck program to connect parents of children with infantile spasms (I.S.) with families who use Sabril to to treat I.S.
YouTube Series on Epilepsy and Seizure Medications (These videos were produced by Patricia McGoldrick, NP, MSN, MPA and Steven Wolf, MD at Beth Israel/Roosevelt Hospital in New York City. Epilepsy topics include birth control, autism, seizure dog, sudden unexpected death in epilepsy, and tuberous sclerosis complex)


Autism Speaks
Autism PDD Resources Network
Autism Research Institute

Autism Society of America
Center for the Study of Autism 
CDC - Autism Spectrum Disorders
Kennedy Krieger Institute   
National Institutes of Mental Health: A Parent's Guide to Autism Spectrum Disorder 
The Autism Research Foundation 
TSC Autism Center of Excellence Research Network 

Psychiatry and Behavior

Cambridge Center for Behavioral Studies
Children & Adults with Attention-Deficit / Hyperactivity Disorder (CHADD)
Kennedy Krieger Institute  
National Attention Deficit Disorder Association
National Sleep Foundation

The Neuropsychiatry of TSC (video courtesy of ATSS)


Kidney Cancer Association
National Institute of Diabetes & Digestive & Kidney Diseases
National Kidney Foundation

PKD Foundation


American College of Cardiology
American Heart Association


American Lung Association
LAM Treatment Alliance
LAM Foundation

LAM Action (UK)

Mesothelioma Information 
Sirolimus for Lymphangioleiomyomatosis (from MEDscape news; requires free registration)

Skin / Dermatology

American Academy of Dermatology
Plastic Surgery Information Services
Dermatology Image Atlas Johns Hopkins University

General Health Research

National Institutes of Health Clinical Center

General Health Sites

American Academy of Family Physicians
American Academy of Pediatrics (health information for the whole family)
Food and Drug Administration

MEDLINE/PubMed (search engine)
Medline Plus: Drugs, Supplements and Herbal Information
National Institutes of Health
The National Alliance for Hispanic Health
University of Texas Houston Medical Education Information Center
U.S. National Library Of Medicine

Health Care Insurance Education/Affordable Care Act/Other Insurance Resources (Federal information on the Affordable Care Act as of October 1, 2013)
State-by-State Health Insurance Marketplace Information (via National Organization for Rare Disorders) 
Putting Patients First (from the National Health Council)


State and National Resources

Brookes Publishing (Family guide books/videos) 
Caring Voice Coalition (Provides financial assistance, insurance education and counseling, and patient support programs for insured or underinsured patients.  See website for eligibility.)     
Family Village – Disability-Related Resources
Families USA – The Voice for Health Care Consumers

Federal Resource Center for Special Education 
Hospital Hotel Guide   
Mandy's Farm for Autistic Women
MetLife Center for Special Needs Planning 
National Family Caregivers Association
National Sleep Foundation
Medic Alert Foundation United States 
National Organization for Rare Diseases (NORD)  
Online Learning for Students with Disabilities (Charitable medical air transportation resources) 
Peace, Love and Lemonade   

School Psychology Resources Online

Side By Side Inc. (This Brookline, Massachusetts group provides supported residential, vocational/educational, social, and therapeutic services for adults with psychiatric or developmental disabilities to live as independently as possible in communities of their choice.)
Special Child
(Resource Foundation for Children with Challenges)
Technical Assistance Alliance for Parent Centers
(Advice on home and community-based services)
The National Information Center for Children and Youth with Disabilities
Woodbine House
(Special Needs Resources)


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    A message from Julianne Moore     Infantile Spasms & TSC: A Devastating Diagnosis     La Esclerosis Tuberosa (Spanish Intro to TSC)

What is TSC?
How is TSC Diagnosed?
Signs of TSC
Genetics of TSC

Living with TSC
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Perspective Magazine Archives
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TS Alliance Grants Program
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TSC Alert Newsletter Archives
Clinical Trials
TSC Natural History Database
Research Resources
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Tuberous Sclerosis Alliance Online CommunityTuberous Sclerosis Alliance Support Community