Kleefstra Syndrome Awareness Day

Every year on 17th September, the global Kleefstra Syndrome (KS) community comes together to raise awareness, share stories, and celebrate our amazing children, young people, and adults living with KS.

Why the 17th of September?

Most people with KS have a deletion on chromosome 9, at 9q34.3. The 9th month is September, and the 17th letter of the alphabet is Q — a perfect date to unite and make our voices heard.

What’s happening in 2025?

This year we’re going bigger than ever! Here’s how you can get involved:

1. #KSAwarenessDay25 social media campaign

We’ll be sharing 17 micro facts about KS across our channels — one for each fact about this rare condition. Follow along and share to help us reach new people.

2. Family awareness video snippets

We hope you’ll all get involved by sharing some short video messages of awareness support featuring your families and individuals with KS. It’s a chance to show the world the joy, strength, and love that shine through, even when times are tough.

3. Influencer & celebrity shout-outs

We’re busy reaching out to mainstream influencers to help us amplify our message. Even one share could introduce thousands of people to KS for the very first time. We hope they’ll help us…keep your fingers crossed!

4. Fundraising & purple events

From cake sales, curry and quiz nights (thanks Courtney!), Skydives (shout out to Cath) and purple dress-up days, our wonderful families always seem to find fun ways to raise funds and awareness. Got an idea? Let us know — we’d love to feature your efforts!

How you can take part

• Wear purple – Turn your timeline purple! Snap a photo in your KS gear and share with the hashtag #KSAwarenessDay25.

• Update your social media profiles – Use our KS profile photo frame as your profile picture or cover photo to create a wave of recognition online. Download the Transparent Profile Picture Frame Here

• Share our posts – Every share helps us reach someone new who may never have heard of KS.

• Send us your photos and videos – We’ll showcase them in our 2025 awareness montage!

✨ Together we can shine a light on Kleefstra Syndrome

Kleefstra Syndrome is rare, and families often feel isolated. Awareness Day is about changing that — showing the world that although life with KS can be challenging, it is also full of joy, resilience, and love.

Join us on the 17th September 2025 as we turn the world purple for Kleefstra Syndrome.