Community Events

2023 Koolen-de Vries Syndrome Foundation Scientific & Patient Advocacy Summit

July 19, 2023 - July 21, 2023

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This will be our first Scientific Summit gathering 20 KdVS experts together to develop a research strategy for the future of KdVS. After the Scientific Summit, we will hold our 5th Patient Advocacy Summit. The Patient Advocacy Summit started as a backyard BBQ with 12 KdVS individuals and the founding doctors, Dr. David Koolen and Dr. Bert de Vries, and has turned into a worldwide conference with over 500 participants, including patients, families and researchers. Central to the gathering will be a unique opportunity to learn, collaborate, and support patients and their families, and conduct clinical studies to further research initiatives.

The Summit will feature keynote presentations, specialist panels, and various breakout sessions. The small group breakout sessions will cover a spectrum of topics that focus on the systematic and creative work being done to increase awareness and knowledge of KdVS. Families and caregivers will directly benefit from conventional and reimagined interventions from other KdVS families.

At this Summit we will engage in surveys from RARE-X and Simons Searchlight. We will take blood samples for our COMBINED Brain biorepository, participate in AI technology research and hear about breaking research from the 20 experts.

Sponsorship of the 2023 KdVS Summit is an excellent way to promote your brand/ organization and ensure the KdVS Foundation is able to maximize funding to advance research, increase awareness, and to change lives.