The Ks community was born in May 2008 bringing together families of children diagnosed with Kleefstra syndrome.  Whilst our team of volunteers are based in the UK, our social networking platforms and web forum allows us to reach out to families across the world.  We rely entirely on donations and grants to fund our work.  On 20th February 2017 we adopted small charity status (charitable unincorporated association) to better enable us to support the KS community and meet our aims.

Our aims are:

  • To support families of children diagnosed with Kleefstra syndrome by encouraging members to share experiences, offer support and celebrate achievements using our social media platforms and traditional web forum.
  • To (where possible) signpost families to the appropriate professional bodies to assist with educational, social, medical, financial or emotional support.
  • To share information on therapeutic services or aids that may improve the quality of life for the individual with Ks.
  • Raise awareness of Kleefstra syndrome and its effect on the individual and their families.
  • To host bi-annual conferences for families and interested professionals, to learn more about Kleefstra syndrome.
  • To host or support social gatherings, offering the opportunity to link families.
  • To provide and maintain a central resource and point of contact for anyone who has an interest in Kleefstra syndrome.
  • To provide a place for medical professionals to gain direct feedback and share relevant information to families affected by Kleefstra syndrome in a controlled manner.

Families should consult a medically qualified clinician in all matters relating to genetic diagnosis, management and health. External links are provided to help families looking for information and as such does not imply that we endorse their content or have any responsibility for it.

Page updated: 11-05-2017