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 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.