The New Zealand Organization for Rare Disorders (NZORD) aims to “improve, support, assist and promote better healthcare and well-being for patients and their families/whanau living with a rare disorder.” Our recent efforts have been focussing on improving education at the New Zealand primary care level; raising awareness of rare disorders amongst the NZ general public and allied health professionals; working with specialist groups to develop clinical pathways, and providing our rare disorder support groups with information to prepare for key stakeholder meetings.
NZORD plays a pivotal role in the New Zealand health strategy as we represent those many complex cases as a central starting point; those people who are faced with a diagnosis often so rare, there may not be anyone else in New Zealand with that particular disease. These patients and their families often feel isolated and daunted by the New Zealand health system pathways as they embark on their journey.
An example of this is SWAN New Zealand, a recently launched 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 had 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 can often lead to feelings of isolation and loneliness. It also hinders patient’s ability to join one of the rare disease support groups available to those who have received a diagnosis.
NZORD acknowledges John Forman’s past presidency at ICORD (International Conference On Rare Diseases and Orphan Drugs) and we congratulate him on his upcoming presentation at the Global Gathering for Rare Diseases – Inaugurating the NGO Committee for the upcoming Rare Diseases meeting. NZORD Chief Executive Letitia O’Dwyer says “It is good to see that we have champions like Mr Forman joining us in raising awareness at international rare disease forums.”
The total number of rare diseases is estimated to be between 6,000 and 8,000. So while they are individually rare, collectively they affect up to 8% of the whole population. This equates to over 370,000 patients in New Zealand alone. Ms O’Dwyer says “it is imperative that NZORD’s focuses on rare disorder issues affecting patients here in New Zealand – we still have some way to go.”