IDefine
IDefine is a nonprofit organization dedicated to discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders.
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  • About IDefine
    • Our Story
    • Our Mission
    • Our Team
  • Caregiver Community
    • What is Kleefstra Syndrome
    • The Kleefstra Clinic
    • Kleefstra Syndrome Care Guidelines
    • Newly Diagnosed
    • Family by Fate
    • Worldwide Map
    • Resources
  • Research
    • Our Purpose
    • Clinical Advisory Board (CAB)
    • Scientific Advisory Board (SAB)
    • Research Funding
    • Funding Opportunities
    • For Researchers
  • Fundraise for Research
    • Donate Now
    • Ways to Give: Crypto, Stock & DAF
    • Fundraising Events
    • Host an Event
  • News + Events
    • Announcements
    • Conferences
    • 2026 North American Kleefstra Syndrome Conference
    • IDefine Blog
    • Scientific Summit 2026
  • Store
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IDefine Blog
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ALL
ALL CSO CornerIDefine NewsUncategorized

CSO Corner, Volume 17: Turning Up the Volume on EHMT1, Part 2

CSO Corner  - July 28, 2026

IDefine Joins Multi-Foundation Research Collaboration with Johns Hopkins to Advance Novel RNA Therapeutic Platform

Uncategorized  - July 23, 2026

CSO Corner Volume 16: Investigating a Gene Therapy for Kleefstra Syndrome

CSO Corner  - June 26, 2026

Chinese Kleefstra syndrome community expresses interest in partnering on future research

IDefine News  -

Southern Roots: A BBQ Reunion marks milestone fifth year with sold-out crowds and strong fundraising

IDefine News  - May 11, 2026

CSO Corner, Volume 15: Drug Repurposing with Unravel Biosciences

CSO Corner  -

IDefine and Unravel Biosciences Announce Drug Repurposing Research Collaboration

Uncategorized  - April 7, 2026

Pickleball with a Purpose: How We Smashed Our $25k Goal

IDefine News  - March 29, 2026

CSO Corner, Volume 14: Turning up the Volume on EHMT1

CSO Corner | IDefine News  -

“By the Book” care arrives: International clinical guideline published for Kleefstra syndrome

IDefine News  - January 25, 2026
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IDefine – The Kleefstra Syndrome Foundation

We are glad you found us.

Together, we are turning barriers into bridges and building a brighter future for everyone affected by Kleefstra syndrome.

Talk to a parent, questions, volunteeringunlock@idefine.org
Kleefstra Syndrome ClinicKleefstraSyndromeClinic@childrens.harvard.edu
617-355-3645
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Diagnosis codeICD-10-CM Q87.86

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