2026 Kleefstra Syndrome Family Conference + Scientific Summit
Join us for an inspiring gathering of families, researchers, and clinicians dedicated to Kleefstra syndrome. This conference is a unique opportunity to connect, learn about the latest scientific advancements, and share experiences within our community.
Scientific Summit
Family & Caregiver Conference
Advancing Therapeutics and Clinical Readiness for Kleefstra Syndrome
Empowering Families, Building Community, and Navigating Care
Join leading researchers, clinicians, and biotech industry experts for two days of rigorous scientific exchange dedicated to accelerating treatments and improving care for the Kleefstra syndrome (KS) community. This specialized track will dive deeply into the latest preclinical models, clinical trial readiness, and emerging therapeutic pipelines. Attendees will have the unique opportunity to collaborate on actionable roadmaps, share updates on cutting-edge gene and drug therapies, and explore new paradigms in biomarker discovery.
Agenda to be released soon.
Designed exclusively for parents, caregivers, and siblings, the Family Conference offers a supportive and engaging environment to learn from top specialists, connect with other families, and celebrate our loved ones. Whether you are newly diagnosed or navigating the transition to adulthood, this track provides practical tools for daily management, advocacy, and future planning. Alongside expert-led clinical sessions, families can enjoy an inclusive Caregiver Village, specialized childcare, and community events designed to foster lifelong bonds.
Potential Agenda Highlights:
Clinical Care Breakouts: Expert-led sessions on managing complex epilepsy, sleep challenges, GI issues, and behavioral management in KS.
Ages & Stages: Tailored tracks covering early intervention (Ages 0-11) through the transition to adulthood and daily living (Ages 12+).
Advocacy & Planning: Guidance on special needs financial planning, trusts, and moving "From Living Room to Legislation.
"Understanding the Science: Accessible sessions including Genetics 101, navigating the new KS clinical guidelines, and understanding the path to future therapies.
Community & Connection: A dedicated Sibling "VIP" SibShop, Newly Diagnosed Family Orientation, and evening celebrations including a Pool Party and Family Fun.
Watch: Family by Fate Videos from Our 2024 Conference
Registration & Accommodations
Location: Westin Waltham, Waltham, MA. Enjoy world-class amenities and a comfortable stay while attending the summit.
Past Conference Gallery
[Space for images of past conferences and the Westin Waltham hotel]
Registration + Accomodations
The Conference will be held at the Westin Waltham outside of Boston, Massachusetts
Enjoy world-class amenities and a comfortable stay while attending the conference. We have moved to a different property down the street from where the conference was held in 2024 to allow for more space for our community, and as an added bonus, we were able to reduce the nightly room rate!
We’re committed to offering support where we can, and thanks to the generosity of a KS community member, we will once again be offering scholarships for families in need. Be on the lookout for additional information in the coming weeks!
We look forward to connecting with you in person this summer!