Over the past year, we have been working hard behind the scenes to transition the KBG Syndrome Association from a patient-led organization into an official nonprofit organization. This step is essential to help us grow, responsibly raise funds, support research, and create meaningful programs for our community.

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Many families have been asking for updates about the KBG Family Conference we hoped to host in October 2026. While we were excited to bring this event to life, delays in the nonprofit approval process — largely due to nationwide government processing slowdowns — mean we will need to postpone the conference until 2027.

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Because our vision for the KBG Family Conference includes a scientific symposium, educational sessions, sibling programming, and family-centered events, having nonprofit status in place is critical for securing funding, speakers, educators, and volunteers.

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We have included answers to the most common questions we’ve received about our nonprofit application and how it impacts the timing and planning of the KBG Family Conference. (INCLUDED BELOW)

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While this delay is disappointing, we believe it will allow us to build a stronger, more impactful event for our community.