IDefine
IDefine is a nonprofit organization dedicated to discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders.
Donate Now Double the Donation
  • 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
  • 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
IDefine
Donate Now
IDefine Blog
Categories
ALL
ALL CSO CornerIDefine NewsUncategorized

IDefine celebrates two-year anniversary, accomplishments

IDefine News  - September 16, 2022

42-year-old rabbi receives KS diagnosis, connects to community

IDefine News  - September 14, 2022

Coming up big for Kleefstra Syndrome Down Under

IDefine News  - August 15, 2022

Connections, information gained from Family Conference

IDefine News  - July 16, 2022

Special attention given to KS siblings

IDefine News  - July 15, 2022

Update on IDefine Research Program

IDefine News  - June 17, 2022

IDefine attends Ultragenyx Rare Entrepreneur Bootcamp

IDefine News  - May 16, 2022

Registration deadline approaching for Family Conference

IDefine News  - April 15, 2022

It Takes a Village Returns

IDefine News  -

GI symptoms in KS and other disorders to get candid analysis

IDefine News  -
← older
newer →
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
Follow
Diagnosis codeICD-10-CM Q87.86

© 2026 IDefine – The Kleefstra Syndrome Foundation, a 501(c)(3) nonprofit founded by parents in 2020. All rights reserved.

Privacy Policy