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 CSO CornerIDefine NewsUncategorized

Early bird registration open for Family Conference, agenda available

IDefine News  - February 17, 2024

2024 Kleefstra Syndrome North American Family Conference Update

IDefine News  - January 14, 2024

A Night at the Races is a winner for IDefine

IDefine News  - December 19, 2023

Regression in Kleefstra Syndrome

IDefine News  - November 19, 2023

The High Cost of Delayed Diagnosis in Rare Diseases: A Call to Action

IDefine News  - October 29, 2023

IDefine’s Margo Metzger Joins EveryLife Foundation for Rare Diseases

IDefine News  - August 20, 2023

Sleep study results expected at end of summer

IDefine News  - July 16, 2023

Meet Disease Concept Model Leader Kristen Connors

IDefine News  -

KS Speech Study Results Being Analyzed

IDefine News  - June 16, 2023

Meet IDefine’s new director of development

IDefine News  - May 19, 2023
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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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