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World-Wide TSC Organizations 

TSC International Website 

General TSC-Related Information

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/Epilepsy Therapy Project  
Epilepsy Center at Wake Forest University Baptist Medical Center 
Epilepsy Life Links (support services through the Northeast Regional Epilepsy Group, Hackensack, NJ)  
Epilepsy Ontario
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

Seizures – by Robert J. Doman, M.D.
Seizure Tracker (Free 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 with families who use Sabril for treatment.)
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 Research Institute

Autism Society of America
Margaret Bauman, MD (Pioneer autism researcher) 
CDC - Autism Spectrum Disorders
Autism Treatment Center (Dallas, TX)   
Global Autism Collaboration   
Kennedy Krieger Institute (Baltimore, MD)   
National Institutes of Mental Health: A Parent's Guide to Autism Spectrum Disorder 
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 Foundation
LAM Health Project
LAM Action (UK)

Skin / Dermatology

American Academy of Dermatology
Plastic Surgery Information Services

Treatment and Reimbursement Support Programs

For Sabril® patients and their caregivers: Lundbeck's Support, Help and Resources for Epilepsy (SHARE)   

For Afinitor® patients and their caregivers: Novartis’s Treatment Reimbursement Access Commitment program (AfiniTRAC®) and Afinitor® Co-Pay Card

  1. For TSC patients with angiomyolipoma: AfiniTRAC® | Co-Pay Card 
  2. For TSC patients with a SEGA: AfiniTRAC® | Co-Pay Card

General Health Research

National Institutes of Health Clinical Center

General Health Sites

American Academy of Family Physicians
American Academy of Pediatrics 
Castleman Disease Collaborative Network (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
U.S. National Library Of Medicine

Patient Safety

American Recall Center (Practical Drug, Device and Healthcare Safety information) 
Radiology Benefits and Risks  

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) 


Benedictine School (The Benedictine School serves children ages 5-21 living with autism, intellectual disabilities and multiple disabilities.)  
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.)
Center for Parent Information and Resources 
Families USA – The Voice for Health Care Consumers
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
Patient Access Network Foundation TSC Financial Assistance Resources (Charitable medical air transportation resources)  
Peace, Love and Lemonade   
Simple Dollars Disability Benefits Guide 
Specialized Care Company (This company designs, markets and sells products that assist dental professionals, nurses and at-home helpers as they provide care for individuals who need dental care, but who are unable to cooperate for safe and effective dental treatment.)  
Step by Step Supportive Services (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) 
State Rankings for People with Disabilities  
Woodbine House (Special Needs Resources)


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