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)
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.
Front
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.
In 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 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 – 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
Perspective – 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 – 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 – Summer 2015
Remembering Dee Triemer, TSC Clinics Up Close – Israel, Databases and Registries: What Are the Differences?
Perspective – 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
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 – 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 – 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
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
Perspective – 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 – Winter 2013
New TSC Diagnosis, Surveillance and Management Guidelines; Update on 2012 TSC Research Efforts; One Family’s Experience in a Clinical Trial
Perspective – 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”
Perspective – 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 – Fall 2011
Young Adult with TSC Gains His Voice; In Memorium: Dr. Mark Mausner; TSC Clinics “Up Close”; 2011 Drug Discovery Summit
Perspective – 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 – 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
Perspective – Fall 2010
My Son’s Evolution from Boy to Man; Why Government Advocacy?; Constituent Survey Results; TSC Natural History Database Update
Perspective – 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 – 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.
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)
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.
Front
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.
In 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 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 – 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
Perspective – 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 – 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 – Summer 2015
Remembering Dee Triemer, TSC Clinics Up Close – Israel, Databases and Registries: What Are the Differences?
Perspective – 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
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 – 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 – 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
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
Perspective – 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 – Winter 2013
New TSC Diagnosis, Surveillance and Management Guidelines; Update on 2012 TSC Research Efforts; One Family’s Experience in a Clinical Trial
Perspective – 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”
Perspective – 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 – Fall 2011
Young Adult with TSC Gains His Voice; In Memorium: Dr. Mark Mausner; TSC Clinics “Up Close”; 2011 Drug Discovery Summit
Perspective – 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 – 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
Perspective – Fall 2010
My Son’s Evolution from Boy to Man; Why Government Advocacy?; Constituent Survey Results; TSC Natural History Database Update
Perspective – 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 – 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.