A Rare Day for Rare Diseases

A Rare Day for Rare Diseases

Wednesday 29 February is a once in 1461 days occurrence. The extra day in a leap-year. And it is NZ Rare Disease Day.

Most rare diseases occur much less frequently than leap-days. One in 2000 to one in hundreds of thousands is the pattern for more than 7000 rare diseases. Individually they are rare but together they are common, affecting an estimated 8% of the entire population. If spread evenly that would be one in twelve households affected by a rare disease, says NZORD executive director, John Forman.

NZ Rare Disease Day is an opportunity for small support groups to raise awareness and raise funds, using resources provided by NZORD through its special website www.rarediseaseday.org.nz Groups can download posters and set up fundraisers in schools, workplaces and clubs, using the easy steps guide provided by NZORD. At last, an opportunity for small and neglected groups to have a chance to raise funds in the face of stiff competition from major charities and professional fundraisers, and regular neglect from most charitable funding sources.

The day provides an opportunity to promote attention to the needs of all rare disease patients in our health system. NZORD and groups within its network are promoting earlier diagnosis, improved clinical care and disability support, and more effort to research health interventions and therapies. A proposal has been submitted to the National Health Committee for the development of a rare diseases action plan for New Zealand. Read more about rare disease issues on NZORD’s website www.nzord.org.nz

ENDS