Pharmacy Daily | Rare Diseases plan

THE Federal Government has launched Australia's first National Rare Diseases Framework and Action Plan.

Under the program funding of $170,000 will be provided to Rare Voices Australia through the Public Health and Chronic Disease Program to enable the development of the scheme.

Health Minister Greg Hunt announced the move on Fri, saying "specific priorities, actions and activities will be identified through extensive consultation including people with a rare disease, clinical and academic experts, policy makers and state and territory governments".

All recommendations for action will be supported by robust evidence so people with rare diseases can receive timely diagnosis, treatment and the best care possible, Hunt said.

There are more than 8,000 rare diseases which are life-threatening or chronically debilitating, with such conditions defined as having an estimated prevalence of five in 10,000 people.

Other initiatives currently in place include the Life Saving Drugs Program which has seen the funding of 14 different medicines for nine very rare diseases, "providing physical, emotional and financial relief for 400 Australian patients," the Minister said.