A central coordination hub for Kleefstra syndrome (type 1) in Europe

Organisations & groups

The Kleefstra syndrome Europe alliance is bringing together national Kleefstra patient organisations/groups from Europe.

To find more information please visit the links below.

Our mission

We work together to improve the lives of our children with Kleefstra syndrome (type 1, gene EHMT1). We lead the Kleefstra syndrome patient advocacy in Europe, we provide contacts to national and regional contacts points for families affected by Kleefstra syndrome. We bring together people, knowledge and expertise. We work closely with researchers and clinicians to discover life-changing treatments. We are part of the international Kleefstra syndrome movement to ensure that Kleefstra syndrome is a recognised rare disease being researcherd to the maximum extent possible.


Contact us

If you have any question or would like to join our community as a formal or informal Kleefstra syndrome (EHMT1) organisation based in Europe, please contact us.

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