SWAN New Zealand is a support group for New Zealand patients and families affected by an undiagnosed genetic condition – a ‘syndrome without a name’. SWAN NZ has been established by the New Zealand Organisation for Rare Disorders (NZORD).
NZORD have been aware of the increasing number of enquiries from patients and families who had not received a diagnosis for their condition. Not having a diagnosis or label for their condition can often lead to feelings of isolation and loneliness. It also hinders their ability to join one of the rare disease support groups available to those who have received a diagnosis.