Charities Commission Registration CC22512

Patient Advocacy Group Welcomes Royal Commission's Recommendations

Press Statement - 30 July 2001

The New Zealand Organisation for Rare Disorders is delighted with the health and research recommendations in the report of the Royal Commission on Genetic Modification.

NZORD Executive Director, John Forman, said there is great relief among patients and their families that the Commission has rejected any restriction on access to vital medicines obtained from genetic modification technology.

"The Commission's report acknowledges the benefits to be gained from further development of such medicines, and the great potential for gene therapy and other novel therapies to treat disease.

"We are very pleased they have supported these objectives by recommending a streamlining and simplification of new research approval processes, and for the approval of new medicines produced", said Mr Forman. "That will help speed the research efforts and produce more treatments sooner.

"NZORD also welcomes the Commission's endorsement of the safety regimes governing such research, and the recommendations for reinforcement of the ethical oversight of the application of this new technology.

"Safety and ethics are of vital interest to families affected by rare and complex disorders, and the recommendations will help to ensure our and the public's confidence in the safety and beneficial application of genetic modification.

"NZORD looks forward to speedy implementation of the report by Government", Mr Forman concluded.