Who we Are

Koolen-de Vries Syndrome Foundation Mission Statement

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

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 voice 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.

Our Impact

Making a difference in the KdVS community

Each year, hundreds of donors donate to the Foundation and help us achieve our mission of education, awareness and research. Our latest Form 990s are available here:

We celebrate the amazing accomplishments of those diagnosed with Koolen-de Vries Syndrome.