Individuals & Families

Publications, Infographics and Sample Letters

TSC Diagnostic Criteria, Surveillance and Management Guidelines

TSC Diagnostic Criteria, Surveillance and Management Guidelines

In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC criteria for diagnosis, surveillance and management published in 2013.


Navigation Guides

The TSC Alliance’s “Navigation Guides” provide essential information to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan. TSC uniquely affects each individual differently, therefore these guides complement our online TSC Navigator tool and focus on providing you with proactive material to help navigate the medical and non-medical aspects of this journey specific to the defined age group.

To download, click the title(s) below:

Navigating the early years of TSC

(in utero to 5 years of age)




Navigating the school age years of TSC

(6 to 13 years of age)




Navigating the transition years of TSC

(14 to 26 years of age)




Navigating the adult years of TSC

(27 years or older)


Sample Letters

You and/or your healthcare provider can use the following sample letters to gain medication pre-authorizations or appeal insurance denials, inform your family members about a TSC diagnosis or for other issues noted below. If you have questions or still need help, please contact us at 800-225-6872 or info@tscalliance.org.

  • Sample vigabatrin insurance denial appeal letter for brand (Sabril®) and generic
  • Sample letter template physicians can use if you’re having trouble with your insurer paying for 90-day supply of medications due to COVID-19
  • The following Prior Authorization letters can be used if your doctor/healthcare provider feels you should stay on brand-name Afinitor instead of changing to the generic everolimus.
  • Sample letter of medical necessity for Epidiolex
  • If your healthcare provider needs more information about the latest in TSC diagnosis, surveillance and management, please download this letter for him/her to review.
  • Telling your family members about TSC can be difficult and overwhelming. Let us help by providing a letter you can use to help explain TSC and provide answers to their questions.
  • What to do if you are reported to Child Protective Services (CPS).  Unfortunately, TSC manifestations – ranging from seizures, no sleep, no appetite, medication refusal, to self-injurious behaviors – can cause acting out, bruises, cuts, and even broken bones. Therefore, someone not knowledgeable about TSC may come to a wrong conclusion about why these behaviors are accruing and/or how these injuries occurred. Many professionals who come in contact with your child (such as teachers, administrators, counselors, school nurses, emergency room doctors, etc.) are “mandated reporters,” which means they are required under the law to report any suspected child abuse cases to Child Protective Services (CPS).

TSC Awareness Cards

Order a free set of “awareness cards” from the TSC Alliance!  You can use these cards to help educate others about TSC and your child or yourself.

Please Note: Unfortunately, we are only able to ship to addresses within the United States.


Parent Awareness Cards

Order this set of cards for parents here.

Adults with TSC Awareness Cards

Order this set of cards for adults with TSC here.

Brochures and Books

An Introduction to TSC

This comprehensive brochure helps explain TSC and its variable features, outlines diagnostic criteria and commonly needed medical tests and  provides an overview of the TSC Alliance.


A Basic Introduction to Clinical Trials

Because participating in a clinical trial is an important personal decision, this brochure offers basic information to help you make an informed decision.


Infantile or Epileptic Spasms and Tuberous Sclerosis Complex

This brochure describes what you need to know about infantile spasms, signs to look for, what you should do, and more.


A Place of Hope

This brochure provides a brief introduction of the TSC Alliance and how you can connect with the organization and get support.


personaljourneyswithtsccoverIn Their Own Words: Personal Journeys with TSC

This booklet was compiled to give readers a glimpse into the lives of ordinary people and families who face the challenges of TSC on a daily basis, whether they are infants, children, teens or adults.


Tuberous Sclerosis Complex

This book provides a comprehensive overview of the molecular basis and clinical features of the genetic disorder tuberous sclerosis.  Special focus is placed on novel insights into the signal transduction pathways affected by the disease and genotype phenotype correlations. Existing and potential therapies are also discussed in depth.


waverly-posterWaverly and The Blue Dolphins

Illustrated children’s book written by the grandmother of a child with TSC.



Perspective Magazine

Perspective – Winter 2023

Current TSC research and clinical studies; Meet the 2023 TSC Alliance Future Leaders; 2022 TSC research review; TrustTSC: Treating uncontrolled seizures in tuberous sclerosis complex; Behind the diagnosis


Perspective – Fall 2022

2022 World TSC Conference in review; Basimglurant, a new mechanism of action to control seizures in TSC; TSC Alliance and Ramesh and Kalpana Bhatia Family Foundation announce new TSC research collaboration; TSC Clinic Up Close: Beaumont Children’s Hospital


Perspective – Winter 2022

Don’t miss the 2022 World TSC Conference; TSC Alliance launches self-report portal; Transition: an emotional journey for semi-dependent and dependent adults with TSC; TSC Alliance staff updates


Perspective – Fall 2021

New TSC Navigator provides interactive online resource; TSC Alliance pilots whole genome sequencing project; Cultivating family, leadership and advocacy through the Future Leaders Program; TSC Clinic “Up Close”


Perspective – Winter 2021

2020 Science and Medical Review: Working Remotely, Driving TSC Research Together; TSC Clinic Focus Group Results; Community Programs Team Looks Ahead; A New Two-Part Clinical Trial


Perspective – Fall 2020

In Their Own Words: Three Men Share Their Lives with TSC; Your Data, Your Solutions; A Salute to Dena Hook; FDA Approves Epidiolex® to Treat Seizures Associated with TSC


Perspective – Winter 2020

TANDem Major International Project Launches to Design App for TSC-Associated Neuropsychiatric Disorders; TSC Alliance Expands Biosample Repository Initiative; Pursuing My Dream in Sports Despite TSC; Transition from School to Adulthood: Can My Child Make Adult Decisions?


Perspective – Fall 2019

Changing the Course of TSC: 2019 International TSC Research Conference; How Government Advocacy Gave Me a New Purpose and Passion; Tips for Parents as Their Child with Special Needs Transitions into Adulthood; The Arc and TSC Alliance Partnership Makes One Family Stronger


Perspective – Winter 2019

Celebrating 45 Years of Changing the Future in the Fight Against TSC; TSC Community Needs and Priorities Shape 2019-2023 Strategic Plan; TSC Alliance Unveils Comprehensive 5-Year Research Business Plan


Perspective – Fall 2018

A Review: The 2018 World TSC Conference, Bringing Hope to the Global TSC Community; Important Information About Vigabatrin and Patient Assistance Programs; Update on the 2018 World TSC Conference Biosample Collection Project


Perspective – Winter 2018

Special Edition: Don’t Miss the 2018 World TSC Conference; TSC Alliance Earns Coveted 4-Star Rating from Charity Navigator; TSC Alliance Submits “Voice of the Patient Report” to FDA


Perspective – Fall 2017

In Memory of Keith Hall, A Gentle Giant; Mosaicism in Tuberous Sclerosis Complex; Advances in Epilepsy Surgery Options; Medicaid at the Epicenter: Advocacy Matters


Perspective – Summer 2017

Eric Schmitt — A Dad Who’s Just Trying to Make a Difference, Upcoming TSC Alliance Conferences, Maximizing TSC Research Resources, TSC Clinics “Up Close:” TSC Clinic at Mount Sinai Health System


Perspective – Spring 2017

TSC Patient-Focused Drug Development Meeting with the FDA, What Are FBA and BIP?, TSC Clinic Screening Tool, TSC Clinics “Up Close:” Nicklaus Childrens Hospital Miami TSC Clinic


perspective-fall2016-coverPerspective – Fall 2016

Engles Family Foundation Pledges $1.25 Million to Create New TSC Research Fund; Rewriting Aiden’s TSC Story; Consider Participating in a Clinical Trial; Advances in TSC Research


Perspective – Summer 2016

My Inspiration in the Fight Against TSC; The Arc: A New Partnership to Support People with TSC; TSC Alliance Honors Volunteers and Community Alliance of the Year


perspectivecover-winter2016Perspective – Winter 2016

Taking Life One Jog, One Mile and One Day at a Time; TSC Clinics Up Close: Le Bonheur Children’s Hospital; Comedy for a Cure Celebrates 15 Years


perspective-fall2015Perspective – Fall 2015

A History of Treating TSC – We’ve Come A Long Way, Seeing TSC as a Gift, Highlights from the 2015 International TSC Research Conference, My Trip to China


perspective-summer15coverPerspective – Summer 2015

Remembering Dee Triemer, TSC Clinics Up Close – Israel, Databases and Registries: What Are the Differences?


perspective-winter15Perspective – Winter 2015

My Earthly Journey with Tiara Has Ended, Section 504: Civil Rights Law You Should Know, Adults with TSC Corner, Volunteer Participation in Clinical Trials Helps Improve the Lives of People with TSC


perspective-fall-2014-coverPerspective – Fall 2014

My Angel Babies: A Grandmother’s Viewpoint; Adults with TSC Corner; The Importance of Advocating for Our TSC Children at School; TSC Clinics “Up Close”


perspective-summer14-coverPerspective – Summer 2014

2014 World TSC Conference Review; School-Related Resources; TSC Alliance 40th Anniversary Celebration; Adults with TSC Corner; TSC Research Roundup; Legacy of Love


perspective-winter14-coverPerspective – Winter 2014

The Critical Importance of Providing TSC Research Funding to Young Investigators; Forty Years Changing Lives 1974-2014; A New Global Alliance; Special Insert: 2014 World TSC Conference


perspective-fall-2013-coverPerspective – Fall 2013

When I Think of Piper, Clinical Trial Recruitment Update, Q&A with Janie Frost About the 2014 World TSC Conference, New Guidelines Announced for Diagnosis, Surveillance and Management of TSC


perspec-summer13coverPerspective – Summer 2013

Amy’s Journey of Hope, Fear, Love and Faith; 2012 International TSC Clinical Consensus Conference Recommendations; MRI and the VNS Therapy System; Early Intervention for Children with TSC Ages Birth to Three Years


perspective-winter13-coverPerspective – Winter 2013

New TSC Diagnosis, Surveillance and Management Guidelines; Update on 2012 TSC Research Efforts; One Family’s Experience in a Clinical Trial


perspective-fall12-coverPerspective – Fall 2012

A Brother to Love, Honor and Cherish; Rose Chodzinski’s Story; Questions to Ask Your Healthcare Provider; TSC Clinic Ambassador Program; TSC Clinics “Up Close”


perspsummer2012coverPerspective – Summer 2012

Hope Rings True for Me and My Family; The Integral Role of the Nurse Practitioner in TSC Clinics; 2012 TSC Clinical Consensus Conference Update


Perspective – Winter 2012

Unlocking a Cure for Tuberous Sclerosis Complex; TSC Clinics “Up Close”; Promising Science on the Possibility of Preventing Epilepsy


perspective-fall2011-coverPerspective – Fall 2011

Young Adult with TSC Gains His Voice; In Memorium: Dr. Mark Mausner; TSC Clinics “Up Close”; 2011 Drug Discovery Summit


perspective-summer2011-coverPerspective – Summer 2011

A Special Painting Shows We Are Not Alone; What Exactly is “ESY?”; TSC Clinics “Up Close”; TSC Alliance Names New Chief Scientific Officer


perspective-winter2011-coverPerspective – Winter 2011

Afinitor Approved by FDA; Sleep in TSC: Why Is It a Problem for So Many Individuals with TSC?; Personal Determination and a Mother’s Support Lead to Independence; Connecting the TSC Alliance, TSC Community and TSC Clinics


perspectivefall2010-coverPerspective – Fall 2010

My Son’s Evolution from Boy to Man; Why Government Advocacy?; Constituent Survey Results; TSC Natural History Database Update


summer2010perspcoverPerspective – Summer 2010

My Daughter’s TSC Story: Triumphing Over Seizures; Sabril (Vigabatrin): Before and After Approval by the FDA; Research Update: Biomarkers for TSC and LAM


perspective-winter2010-coverPerspective – Winter 2010

The Amazing Strides in TSC Research; Don’t Learn the Hard Way; TSC Clinics Up Close



White Papers

Vigabatrin-Associated Visual Field Loss (VAVFL): What You Need to Know

Written by Darcy A. Krueger, MD, PhD, this white paper provides easy-to-understand information about the use of vigabatrin to treat infantile spasms and addresses concerns about visual field loss.