The LAM Trust takes an active part in working alongside an ever increasing number of rare disease organisations in this country and around the world to improve the welfare of people with rare diseases and to offer patients and their families better knowledge, scientific research and education and awareness.
In March 2008, the Executive Director of the New Zealand Organisation for Rare Disorders, John Forman and NZORD Board member, Linda Clarke met with Health Minister, David Cunliffe to seek the Minister’s consideration on the promotion and need for centralised responsibity and government recognition and policy in dealing with rare disorders. It has been a long term priority for NZORD and for the large numbers of family and support groups affiliated to the national group,to change the history of neglect for rare diseases, clinical care information and treatment issues for those approximately 8% of New Zealanders suffering from a rare disease.
The full briefing and request to the Minister is available on the website www.nzord.org.nz; but the three main issues covered in the Briefing were:
- that the Government recognises rare diseases as a significant public health issue with a suitable policy response
- that the Government appoints an individual or group with responsibility and authority to coordinate policy relating to rare diseases
- that the Government implement the Molecular Genetic Testing Report (Oct 2003) as a first priority item.