register

News & Trends - Pharmaceuticals

First national action plan for rare diseases

Health Industry Hub | February 28, 2020 |

The Morrison Government will provide up to $3.3 million for activities to implement the first National Strategic Action Plan for Rare Diseases, which was launched yesterday ahead of Rare Disease Day (February 29, 2020) .

The Action Plan will increase awareness and promote earlier, more accurate diagnosis and treatment for around two million Australians suffering from rare diseases.

Rare diseases are having a major impact on individuals and families across Australia. They cause great uncertainty, frustration and fear, raising a myriad of questions, with few answers.

While each rare disease affects less than five in every 10,000 people, there are more than 7,000 currently known rare diseases.

Approximately 80 per cent of rare diseases are of genetic origin. Others include rare cancers, infections and autoimmune disorders.

The Action Plan is comprised of three pillars:

  • Awareness and education.
  • Care and support.
  • Research and data.

Each pillar has key priorities for action, including prevention, early detection and screening, accurate and fast diagnosis, and access to the right treatment.

The Government provided $170,000 to Rare Voices Australia to develop the Action Plan, including consultation with stakeholders and people living with rare diseases, their families and carers.

The Government will provide up to $3.3 million for activities to implement the Action Plan, including activities to improve the medical profession’s knowledge and awareness of rare diseases.

Rare Voices Australia will receive up to $1 million over three years, from next financial year, to continue its work as the peak body for this issue.

We will also be calling for organisations to develop and deliver new education resources to health professionals, and to provide new support for people living with a rare disease, with a total funding of up to $2.3 million.

You may also like Access to genomic testing to reduce the exhausting journey of rare disease diagnosis in children


News & Trends - Biotechnology

AusBiotech appoints new CEO: Former Sanofi corporate affairs and sustainability leader takes the helm

AusBiotech appoints new CEO: Former Sanofi corporate affairs and sustainability leader takes the helm

Health Industry Hub | April 23, 2024 |

Biotech News: AusBiotech, the nation’s leading industry body for the biotech sector, has named former leader at Sanofi, Rebekah Cassidy, […]

More


News & Trends - MedTech & Diagnostics

Federal government invests in Siemens Healthineers scanner to 'reduce wait times' for cancer diagnosis

Federal government invests in Siemens Healthineers scanner to ‘reduce wait times’ for cancer diagnosis

Health Industry Hub | April 23, 2024 |

MedTech & Diagnostics News: The Albanese Government is investing $12 million through the 2024–25 Budget, to purchase and install a […]

More


News & Trends - MedTech & Diagnostics

Cardiac device benefits face more cuts, while technical services remain secure in the short term

Cardiac device benefits face more cuts, while technical services remain secure in the short term

Health Industry Hub | April 23, 2024 |

MedTech & Diagnostics News: Starting from July 2024, Cardiac Implantable Electronic Devices (CIED) listed on the Prescribed List (PL) will […]

More


News & Trends - Biotechnology

CSL's world-first gene therapy heads for MSAC assessment

CSL’s world-first gene therapy heads for MSAC evaluation

Health Industry Hub | April 23, 2024 |

Biotech News: CSL’s world-first gene therapy for haemophilia B is scheduled for consideration at the upcoming Medical Services Advisory Committee (MSAC) […]

More


This content is copyright protected. Please subscribe to gain access.