NZORD - the New Zealand Organisation for Rare Disorders
International Rare Diseases Day arrives in New Zealand – Sunday 28 February.
· The Vodafone Warriors stand tall for rare disease patients.
· Rare skin blistering disease Epidermolysis Bullosa carries the flag for all rare diseases at the Vodafone
Warriors carnival week.
The Vodafone Warriors kick off their 2010 carnival week on Wednesday with community events, hospital visits, and their
final pre-season game against Manly at North Harbour Stadium on Saturday 27th February. But behind the celebration and
fun will be a serious commitment from the team, supporting rare disease groups.
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.
Carrying the flag for all rare disease groups at the Vodafone Warriors Carnival week will be the DEBRA support group,
which supports patients and families affected by Epidermolysis Bullosa, a skin blistering disease which means skin can
be lost at the slightest touch. In its most severe form EB can require many hours of skin repair and bandaging each day.
The DEBRA group has lead an innovative service development that funds specialist EB nurses from the group’s own
fundraising, and which has significantly improved the health and quality of life of EB patients and families.
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 and spreading rapidly around the globe.
The Vodafone Warriors have been a staunch ally of rare disease groups and other health interests over many years. Their
efforts in reaching out into the community and supporting us are very welcome and provide inspiration for the patients
and families whose lives are dramatically impacted by rare diseases.
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.
NZORD and DEBRA believe the momentum for International Rare Diseases Day will grow in future years, and they are working
to broaden community involvement and activities next year.
ends