Fundraising for Kleefstra Syndrome UK

Fundraising is at the heart of everything we do at Kleefstra Syndrome UK. As a small, parent and friend-led charity, we rely entirely on your significant efforts and resulting charitable donations to keep supporting families living with this rare genetic condition. Every pound you raise helps us bring people together, provide vital support, and offer hope when it’s needed most.

How your support can help

When you take part in your own fundraising efforts for Kleefstra Syndrome UK, you’re helping us to:

Support families through every step of their journey
We provide emotional support, practical advice, and a community of understanding to families affected by Kleefstra Syndrome. Whether a child has just been diagnosed or is entering adulthood, we’re here to help parents and carers feel less alone. Find out more about our Callback service below.

Deliver our Family Conference
Our much-loved conference takes some organising! But it brings families from across the UK together for a weekend of connection, learning, and shared experiences. It’s a chance to hear from experts, meet other families, and feel part of something bigger and it’s something we want to offer as often as we can because you’ve told us you enjoy it and get a lot from being together with other families. Want to see what we got up to at our Family Conference last year?…find out by clicking below.

Run regional events and meet-ups
We organise smaller gatherings throughout the year so families can build friendships and support networks closer to home. These events create lasting bonds and offer a safe space to share both challenges and triumphs. Just like with the family conference, we want to do more of these and so, with more charitable donations, we can facilitate these events more frequently and in more locations across the UK.

Raise awareness and push for better understanding
We work hard to raise the profile of Kleefstra Syndrome so families get the support they need from healthcare, education and social care services.

You can help us make a difference!

Right now, we’re proud of what we’ve achieved — but we know there’s so much more we could do with greater support. With more charitable funding, we could:

• Reach more newly diagnosed families with welcome packs and one-to-one support
• Offer more events and local meet-ups throughout the year
• Create a bigger and better Family Conference
• Create more resources for schools, professionals and families
• Invest in awareness campaigns

Your fundraising helps us grow, reach further, and do more. Whether you bake cakes, run a marathon, host a quiz night or take on a personal challenge, you’ll be making a real impact to children and their families.

Join Our Mission

By fundraising for Kleefstra Syndrome UK, you become part of a community determined to make life better for families affected by this condition. Every effort counts. Every donation helps. And every fundraiser is part of something powerful.

Want to get started? Find out more about HOW you can fundraise for Kleefstra Syndrome here.

Together, we can make sure no family faces Kleefstra Syndrome alone.