February 2010 LAM update

The New Zealand LAM Trust joins the New Zealand Organisation for Rare Disorders and many other support groups around the country and around the world in acknowledging International Rare Disease Day.

February 28th is International Rare Diseases Day, a new event on the calendar, drawing in groups from New Zealand and around the world as they work to improve information and support for patients and families affected by rare diseases, to improve health care, and boost research into treatments for them.

International Rare Diseases Day began just a few years ago in Europe, on 29 February 2008 (well of course, it’s the rarest day in the calendar). Originally intended to be celebrated just in leap years, momentum and enthusiasm have grown so it is now an annual event.

The NZ Organisation for Rare Disorders is an umbrella network that provides information for patients and families, a directory of support groups, and promotes rare disease issues with health professionals and officials. It was set up in 2000 and has made progress on a number of fronts by working in networks with many other groups on issues including expansion of newborn screening, improvements to genetic services, improvements to medicine funding, and provision of websites to small support groups.