2026 North American Kleefstra Syndrome Family + Scientific Conference

We look forward to gathering in Boston this summer with all of our Kleefstra syndrome community to hear from key note speakers, learn the latest from our doctors and specialist, engage in meaningful conversations with families and give our children time with one another to explore and create memories for a lifetime.

The conference will be held from August 6 - August 9 at the Westin Waltham (about 20 miles NW of Boston Logan International airport). We have a negotiated room rate of $149/night! This rate is effective from August 3 - August 13. Please note that there is also $20/day parking fee.

Please register to indicate your interest in attending this conference. Doing so allows us to best communicate with the venue regarding preparations. We are offering Early Bird Registration for both Adults ($93.43 instead of $149) and Children ($49 instead of $93.43). Early Bird Registration ends May 10, 2026. We are providing KidCare during the morning and early afternoon both Friday and Saturday. This will be a requirement for all participants with KS and siblings under age 15.

We are appreciative of the support of some members of our community who have created a financial sponsorship for families who would otherwise not be able to attend the conference or would face significant financial hardship to attend the conference. If you are seeking financial assistance, please reach out to us at unlock@idefine.org with an explanation on your need and desire to attend the conference, what you hope to achieve by attending, how many people you are seeking support for, and if you would be willing to volunteer at the conference or in the future.

We are happy to provide this overview of the conference

2026 North American Kleefstra Syndrome Family Conference

Defining the Future: From Care to Cure

The upcoming Kleefstra Syndrome Conference is designed as a vital intersection of scientific progress and heartfelt community support. The first half of the event focuses on Insight and Innovation, where families will gain exclusive access to the latest research breakthroughs and clinical care guidelines. These sessions are crafted to empower you with a deeper understanding of the genetic landscape, neurology, and management strategies for the syndrome. By hearing directly from those at the forefront of KS research, you’ll walk away with a clear-eyed view of the advancements being made to improve quality of life and the tools necessary to advocate for your loved one’s health.

As the weekend progresses, the focus shifts toward Care and Connection, honoring the lived experience of walking this unique path. This portion of the schedule prioritizes the "Caregiver Village," offering a dedicated space for networking, future planning, and navigating the complexities of adulthood within the KS diagnosis. From legal and financial workshops to panels on sibling bonds and long-term care, the goal is to ensure no family feels they are walking alone. This is an opportunity to build a lifelong support system, share hard-won wisdom, and find strength in a community that truly understands the beauty and challenges of the Kleefstra journey.