When Novi Riandini got married to her husband, it was the day a close relationship with haemophilia started. At the time, it was very difficult for her to find any source of information related to haemophilia. Novi has been instrumental in building the patients organisation, from a parents’ support group to a multi-sector organisation in 2005, when the Indonesian Hemophilia Society, formed by doctors, nurses, people with haemophilia and families was established and officially recognised by the Ministry of Health.