Recent Announcements
Southern Roots Reunion
April 11, 2026, Travelers Rest, SC
While there is no better excuse to gather together than to break bread and enjoy a great meal, the true reason behind Southern Roots is helping further the research of Kleefstra syndrome! Join our community to have a good time and make an impact!
Ella's Buddies Silent Auction
April 10, 2026, Travelers Rest, SC
Bid on a one-of-a-kind art pieceunique experiences, vacations, and gift baskets!
IDefine and Unravel Biosciences Announce Drug Repurposing Research Collaboration to Accelerate Treatments for Kleefstra Syndrome
April 7, 2026, Atlanta, GA
University of Chicago and IDefine Partner to Advance Programmable RNA Therapy for Kleefstra Syndrome
March 30, 2026, Atlanta, GA
Read our CSO Corner, Volume 14 about the project.
Conferences: Kleefstra Syndrome Family + Scientific Conferences
We’re thrilled to announce our next in person Family + Scientific Conference at the Westin Waltham from August 6-9, 2026! Stay informed about IDefine’s involvement in the global conversation around Kleefstra Syndrome and rare disease research. Below is a list of upcoming conferences where our team or community members will be present, as well as a historical archive of past events we’ve attended, spoken at, or promoted in partnership with the scientific and rare disease community.
🗓️ Upcoming Conferences
2026 North American Kleefstra Syndrome Family + Scientific Conference
- Date: August 6-9, 2026
- Location: The Westin, Waltham, MA (Outside of Boston)
- Purpose: Our multi-day family and scientific conference serves to inform, educate, and accelerate our mission of advancing research and care for those affected by Kleefstra syndrome. The event brings together families, clinicians, and researchers to strengthen community connections through shared knowledge, lived experiences, and collaborative progress.
- Visit the Conference Page
Want to represent IDefine at a conference or share your experience from an event?
Reach out to us »- Date: August 6-9, 2026
Our Blog
Past Conferences & Events (2020–2025)
| Year | Conference/Event | Location | Link |
|---|---|---|---|
| 2025 | Termeer Institute’s 2nd Annual Rare Disease Day | Leiden, Netherlands | View » |
| 2024 | North American Kleefstra Syndrome Family + Scientific Conference | Boston, MA | Event Recap » |
| 2022 | Global Genes Rare Advocacy Summit | San Diego, CA | Event Info » |
| 2022 | Kleefstra Syndrome Scientific Conference | Virtual | Watch Recordings » |
| 2021 | Kleefstra Syndrome International Scientific Conference | Virtual | Watch Recordings » |
Quick Clips: Kleefstra Syndrome in the News
Nola.com: Mother's calling to help others was heard at her child's bedside
Indianapolis Star: Tools break down barriers for young artists with disabilities at Fishers Elementary
Boston Children's Hospital: Cracking the code on Kleefstra syndrome: It takes a community
2022 Conference
International Kleefstra Syndrome Family + Scientific Conference
Hosted by IDefine, Boston Children’s Hospital Translational Neuroscience Center, Radboud University Medical Center, and KleefstraSyndrome.org
The event is free and open to all families, advocates and organizers interested.
Gallery
Organize a Meet Up
Are you interested in organizing a meetup for families in your area? Reach us at community@idefine.org .
Newsletter Archive
Are you looking for newsletter archive? You can access previous newsletters by clicking here.
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If you have any questions feel free to contact us. We will be sure to get back to you as soon as possible.