Who We Are

Koolen-de Vries Syndrome Foundation Mission Statement

To educate, increase awareness and promote research for the support and erichment of individuals living with Koolen-de Vries Syndrome and their families.

Mother kissing smiling son with Koolen-de Vries Syndrome

Our Aims

  • To act as an international group, supporting, informing and networking with anyone affected by Koolen-de Vries Syndrome (KdVS) and with any interested professionals.
  • To promote awareness of KdVS.
  • To bring families and individuals affected by KdVS together in order to support one another.
  • To support and promote relevant research projects and encourage participation from individuals with KdVS.
  • Collaborate with our Medical Advisory Board to provide up to date information regarding new KdVS research, surveys, findings and medical advances.
  • To help facilitate social gatherings and educational events for individuals and families affected by KdVS and medical professionals and/or support staff.
  • To ensure that hospitals, doctors, health authorities, genetic clinics and other professionals are aware of the foundation so that patients can access the resources available to them.
  • To give presentations about KdVS to parent groups, professionals and the general public.
  • To represent the voices and perspectives of individuals and families affected by KdVS by participating in professional working groups, advisory boards, committees and conferences worldwide.
  • To raise funds to support the group’s activities and produce literature to make others more aware of KdVS.

We celebrate the amazing accomplishments of those diagnosed with

Koolen-de Vries Syndrome.