Family Resources
Download the New KAT6A & KAT6B Caregiver Handbook
This handbook is meticulously crafted by our team at the KAT6 Foundation, in conjunction with research advisors, to help families understand KAT6 syndromes and get the guidance to begin managing life with KAT6.
More language translations will be available soon.
More language translations will be available soon.
Additional Resources
Webinars
Therapies
Video
Teaching Through Music, Visuals and Montessori Principles by María Pilar Jaén Mercadal
Webinars
Science
Video
Rett Syndrome and KAT6A Related Disorders: Overlapping Clinical and Genetic Journey of Affected Individuals by Dr Simranpreet Kaur, PhD
Webinars
Science
Video
Novel Variants in KAT6B Spectrum of Disorders by Valerie A. Arboleda MD, PhD and Megan Yabumoto, BS
Webinars
Science
Video
KAT6A Syndrome Sleep Behavior and Adaptive Function by Clay Smith, MD and Jacqueline Harris, MD
Webinars
Science
Video
Drug Development: The Potential for Future Therapies for KAT6 Disorders by Typhaine Lejeune
Webinars
Science
Video
Understanding Rare Diseases, KAT6A, KAT6B, and the Patient Registry by Dr Bhawika Lamichhane, PhD
Webinars
Science
Video
DNA Methylation Episignatures in the Diagnosis of Mendelian Neurodevelopmental Disorders by Dr. Mike
Webinars
Science
Video
Intestinal Organoids from Human-Induced Pluripotent Stem Cells for Disease Modeling: The Future is Closer Than We Think by Dr. Gustavo Mostoslavsky, PhD
Webinars
Science
Video
Biochemical Basis of Intestinal Dysmotility in KAT6A by Richard I. Kelley, MD, PhD
Webinars
Science
Video
Supporting patient -focused research through KAT6 IPSC Bank. Center for Regenerative (CReM) – Boston University- Research in Progress by Dr. Angie Serrano
Webinars
Science
Video
Early Treatment Pathways for Children with Neurodevelopment Disorders by Dr David Amor, Alice Lockwood – NAPA OT, Mara Kenyon – NAPA OT and Tanya Tripathi
Webinars
Advocacy
Video
Advocating for Answers, The Battle Against Rare Diseases by the KAT6A Foundation
Webinars
Advocacy
Video
Best Practices for Effective Education Plans by Sue Carpenter, Susan Hartung, Beth Woodbury and Amy Young
Science
Printable Resources
PDF
KAT6A Syndrome: Deficiency of a Histone Acetyltransferase as the Cause of Mild to Severe Mitochondrial Disease by Richard l Kelley, MD, PhD
KAT6B Information
Printable Resources
PDF
Of Special Concern: Bowel Obstructions in the KAT6 Population – November 2022
KAT6A Information
Printable Resources
PDF
Of Special Concern: Bowel Obstructions in the KAT6 Population – November 2022
KAT6A Information
Printable Resources
PDF
Fact Sheet: Speech, Language and Communication in KAT6A Syndrome – September 2023
In The Press
TV Show
Video
KAT6 Foundation on Laughter Saves Lives TV Show – March 1, 2023 (Begin at minute 9)
In The Press
TV News
Webpage
Wexford Family to Discuss ‘Lámh’ Sign Language on Late Late Show – October 21, 2022
In The Press
TV News
Webpage
Rare Disease Day KAT6 Awareness TV News Segment – February 18, 2023 (In Spanish)
In The Press
TV News
Webpage
Genome Testing Brings Quicker Diagnosis to Bronson Children’s Hospital Patients
In The Press
Podcast
Webpage
Spring Lake Stories- Katie Bator – September 26, 2023 (Begin at minute 30:22)
In The Press
Podcast
Webpage
KAT6A Highlighted for Rare Disease Day on Your Child’s Brain Podcast – February 2, 2023
In The Press
Podcast
Webpage
Inspirational Tales Podcast: Meg Salisbury- Celebrating Rare Disease Day and Raising a Child with KAT6A – February 2022
In The Press
Podcast
Webpage
Fire in Her Eyes Podcast: Navigating The Unknown With Extraordinary Love: Two Mothers’ Journeys with KAT6- January 11, 2026
In The Press
Newspapers
PDF
Spring Lake Intermediate, Middle School KATwalk Tribune Article – September 24, 2025
In The Press
Newspapers
Webpage
Splitters Creek Toddler First Confirmed Case in Australia of Genetic Mutation
In The Press
Newspapers
Webpage
Cape Coral Child Only the 80th in the World Diagnosed with Rare Disorder
In The Press
Newspapers
Webpage
‘One in a Million’: Emma’s Odho Syndrome Makes Her Not Want to Eat or Drink
In The Press
Newsletters
PDF
Association for Science in Autism Treatment: Interview with Leigh Broughan, Sam’s Sister
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EVENTS
Upcoming events from the KAT6 Foundation
The KAT6 Foundation has events all year long, all across the nation! See our upcoming events below:
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