KBG Foundation

As KBG Syndrome Awareness Day begins for our friends across the pond, we’ll be honest: we had hoped to do more this year.

More posts. More graphics. More reminders. More everything.

But rare disease life does not always leave room for polished plans. Sometimes the work is quieter. Sometimes advocacy is happening behind the scenes. Sometimes the people doing the awareness are also caregivers, parents, siblings, patients, and families trying to get through the day.

So today, even if we are quieter than planned, we are still here.

We are still raising awareness for KBG syndrome.
We are still fighting for recognition, research, understanding, and connection.
We are still celebrating every rare and remarkable person in this community.

To our KBG families in the UK and around the world: we see you, we love you, and we are grateful to be linked together.

Because every link matters.

📣 Simons Searchlight Releases New Quarterly Reports! 📣

📊 The Simons Searchlight April 2026 quarterly report is here—with updated insights and fresh data on individuals with ANKRD11 (KBG syndrome), powered by families like ours.

Check out the valuable information in this report here:
http://bit.ly/ANKRD11Report

These reports are based on medical history information generously shared by participants and include data in four key areas:

Age Ranges
Developmental and Behavioral Conditions
Neurological Conditions
Gastrointestinal Conditions

They also feature community participation progress numbers, showing how families are actively moving research forward.

💡 By completing surveys over time, we're helping researchers better understand KBG syndrome and how it changes across the lifespan. Together, we’re turning limited knowledge into meaningful discoveries—for our families and others in the future.

Thank you for being part of this important work! 💙

*Not a current Simons Searchlight participant? Learn how you can contribute to the study and be included in future reports:

https://bit.ly/Why_Join_Simons_Searchlight