Geared towards researchers, clinicians, geneticists, family members, caregivers and other stakeholders, K.I.D.S. IQ Project’s events and webinars play an important role in education and research collaboration and providing updates on key initiatives. Please join our subject matter experts to discuss pressing issues, ask questions and learn about topics important to you.

You can also find here information on events and webinars hosted by third parties, strategic partners and families in our community.

If you cannot attend a K.I.D.S. IQ Project event or webinar at its designated date/time, be sure to register and you will be notified if it becomes available for online viewing later (note that some events and webinars may be redacted or not recorded at all due to privacy and/or copyright matters).

Upcoming Events & Webinars

Past Events & Webinars

  • June 29-July, 2018: 2018 Kleefstra Syndrome Conference and Walk & Roll

    Over 200 people joined together to learn about the latest science surrounding Kleefstra Syndrome, including updates on existing drug treatment research as well as high-potential projects for the future. The weekend also included presentations on how to build an effective healthcare team for your KS family member and the hidden relationship between genetic screens and medication. The conference provided families with a unique opportunity to come together and share their experiences through family discussion periods and social events like the KS Walk & Roll – a group awareness walk.


    Scientific Advisory Board Update – Research Strategy and Future by Dr. Harvey Lodish

    Kleefstra Syndrome Update by Dr. Kleefstra (PDF)

    K.I.D.S. IQ Project Research Update – Radboud University Medical Centre

    • Dr. Hans van Bokhoven (PDF)
    • Dr. Nael Nadif Kasri (PDF)

    K.I.D.S. IQ Project Research Update – Boston Children’s Hospital (PDF)

    Family Topic Presentation – Pharmacogenetics by Dr. Brian van Ness (PDF)

    Family Topic Presentation – Doctors and Therapies by Neha Verma (PDF)

  • January 30, 2018 (Past Webinar): Intro to Applied Behaviour Analysis (ABA) Therapy

    ABA is a therapeutic approach that uses the principles of learning to teach important social behaviours and improve the overall quality of life for your child. Learn how ABA therapy can have great results for children living with an Intellectual Disability syndrome, such as Kleefstra syndrome. View the recorded webinar or download the updated slides (PDF).

  • December 22, 2017 (Past Webinar): Pharmacogenetics – Using Genetics To Improve Drug Effectiveness

    Did you know that the same drug can have a different effect on different people based on their genetic profile? Watch our webinar as we discuss how this knowledge can help us improve drug effectiveness – especially for those with Kleefstra syndrome. View the recorded webinar or download the updated slides (PDF).

  • November 14, 2017: K.I.D.S. IQ Project Annual Benefit

    K.I.D.S. IQ Project hosted its second Annual Benefit in support of new drug therapies for Intellectual Disability disorders. With the wonderful support of our event sponsors and generous donations on the night of the event, we raised over $300,000!

  • November 10, 2017 (Past Webinar): Kleefstra Syndrome and Mental Health

    Learn about the relationship between mental health and Kleefstra syndrome, including the issue of regression. View the recorded webinar or download the slides (PDF).

  • October 7-15, 2017: Second Annual Kleefstra Syndrome Global “Walk & Roll”

    K.I.D.S. IQ Project hosted its second annual global Walk & Roll. People from around the world participated in planning a walk in their own community to raise awareness about Kleefstra Syndrome. At the close of the event, our combined efforts raised close to $100,000! A huge thank you to all participants and congratulations on another great year.

  • September 20, 2017 (Past Webinar): Drug Repurposing – How A Drug Approved For One Disease Can Be Effectively Used To Treat Another

    Learn about the opportunity to take drugs already approved for one illness and repurpose them to a new target illness. In this webinar, we discussed why this is a viable strategy for Kleefstra Syndrome in addition to why additional testing is required. View the recorded webinar or download the slides (PDF).

  • September 17-25, 2016: Kleefstra Syndrome Virtual Walk & Roll (Global)

    K.I.D.S. IQ Project held its first annual virtual “Walk-and-Roll”. Families around the world affected by Kleefstra Syndrome walked or rolled (wheelchair, stroller or cycle!) their way across a self-designated 5K (3.1 miles) route in their local communities. All proceeds raised went towards developing a drug to treat Kleefstra Syndrome.

  • August 8, 2017 (Past Webinar): Drug “Hit” Identified In KS Screening Using iPSC

    Learn about the exciting drug “hit” identified by our Netherlands research partner using iPSC technology. This is likely the first time in history that a specific compound has been shown to improve or reverse Kleefstra Syndrome in a lab environment. View the recorded webinar or download the slides (PDF).

  • June 25, 2016 (Conference): Kleefstra Syndrome 2016 U.S. Conference in Boston, MA

    Over 200 families joined together to learn about the latest science surrounding Kleefstra Syndrome and plans for identifying potential drug treatments. This conference was also a unique opportunity to hear from other families affected by Kleefstra Syndrome and learn from their experiences.