The Ks community was born in May 2008 bringing together families of individuals 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.  In July 2023, we adopted Charitable Incorporated Organisation status to better enable us to support the KS community and meet our aims and, in 2024, we were granted Charity Registration status with the Charity Commission (Registered Charity number 1208059).

Kleefstra Syndrome UK’s aims are:

  • To support families of individuals 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 regular 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.

We support the relief of Kleefstra syndrome by:

  • increasing awareness of the symptoms of Kleefstra syndrome to support diagnosis and professional and medical assistance
  • the provision of information, advice and other assistance, to support those affected with Kleefstra syndrome.
  • the promotion of research into the causes, treatment and management of Kleefstra syndrome
  • disseminating and publishing the useful results of any such research and
  • undertaking any other charitable activities in connection with Kleefstra syndrome.

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: 08-05-2024