Conference To Address People With Rare Diseases
Conference To Address News Of People With Rare Diseases
An organisation for people with rare diseases is to be set up following a conference in September.
The conference, which will run on September 1 and 2, is to be held in Wellington and will have a number of expert speakers. Issues to be covered will include current developments in research and understanding of the causes of rare diseases.
"We are wanting to build a strong alliance between families, patients and research and medical interests," explains John Forman the convenor of the conference steering group.
"The rarity of many diseases means early diagnosis is very difficult. This often has long-term implications for patients and their families, and of course for the health system. A national organisation would coordinate advocacy, education and the promotion of research."
"By forming an umbrella group to represents the interests of all rare diseases, we will also be able support the support groups, which often have very few members."
A detailed conference programme will be produced later this month. These are available from The Conference Organising Committee, NZ Organisation for Rare Diseases, c/- Parent to Parent, PO Box 234, Waikato Mail Centre.