Use this directory to find patient support organisation including condition and diagnosis-specific formal and informal groups and Disabled Persons and Family Organisations.
Search for a particular diagnosis or condition using the search box.
If you are looking for mental health and wellbeing related supports, such as therapists and peer support, please search the Centre of Perinatal Excellence e-COPE directory.
Van Wright Foundation
Our focus is to raise funds for research into a cure, drive activities that will increase awareness, bring newly diagnosed families together and be involved in the establishment of a register of cases of MECP2 duplication syndrome.