Skip Navigation Links
 
Text Size
 
 

HELPFUL LINKS 

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
TOUS: CAS TUBEROUS SCLEROSIS (French site)
The Rothberg Institute for Childhood Diseases
mTOR Signaling Pathway & mTOR Inhibition Resource
Facing TSC 

Genetics

American Society of Human Genetics
DNA From the Beginning
Genetic Alliance

Genetics Home Reference: Your Guide to Understanding Genetic Conditions

Brain

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

Epilepsy

American Epilepsy Society
Cyberonics
(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 (Epilepsy.com)
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

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)

Kidneys

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

PKD Foundation

Heart

American College of Cardiology
American Heart Association

Lungs

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

Familydoctor.org (health information for the whole family)
Food and Drug Administration

Healthlinks.net

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

www.healthcare.gov (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)

Support

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 
PatientTravel.org (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

TheArcLink.org
(Advice on home and community-based services)
The National Information Center for Children and Youth with Disabilities
Woodbine House
(Special Needs Resources)

Top

 
  Skip Navigation Links
Find a Local Branch
Find a Global Alliance
Become a Volunteer
Become a Member
Government Outreach
Connect With Others
Ways to Give
 
  calendar
 
 
   



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


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

INDIVIDUALS & FAMILIES
Living with TSC
Family Support
Adult Resources

TSC Connect
Brochures & Booklets
Information Sheets
Life Stages Guides & Personal Journals

Perspective Magazine Archives
TSC Clinics

RESEARCHERS
TS Alliance Grants Program
Other TSC Funding Opportunities
TSC Alert Newsletter Archives
Clinical Trials
TSC Natural History Database
Research Resources
International Scientific Advisory Board

Tuberous Sclerosis Alliance Online CommunityTuberous Sclerosis Alliance Support Community